A&U September 2017

SEPTEMBER 2017 • ISSUE 275 • AMERICA’S AIDS MAGAZINE

SAYING yEP TO PrEP • amfAR’s Kevin Robert Frost on HIV Prevention in the Philippines • Women of Color Share Their Experiences

*plus

• Josh Robbins • Paul Thorn • Carol Marsh • PAWS • Saul Bromberger & Sandra Hoover • March on Washington Turns 30

eric

LEONARDOS

Fights for the Needs of the HIV Community & Launches Beauty Allies, a New Initiative that Links Salons to the Social Good

YOU MATTER AND SO DOES YOUR HEALTH

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

WHAT IS DESCOVY®?

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

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

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

IMPORTANT SAFETY INFORMATION

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

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

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

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

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

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

• Bone problems, such as bone pain, softening, or thinning, which may lead to fractures. Your healthcare provider may do tests to check your bones.

The most common side effect of DESCOVY is nausea.

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

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

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

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

• If you are pregnant or plan to become pregnant.

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

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

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

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

IMPORTANT FACTS

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

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

POSSIBLE SIDE EFFECTS OF DESCOVY

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

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

• Changes in your immune system.

• New or worse kidney problems, including kidney failure.

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

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

• Bone problems.

The most common side effect of DESCOVY is nausea.

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

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

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

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

• Have any other medical condition.

• Are pregnant or plan to become pregnant.

• Are breastfeeding (nursing) or plan to breastfeed.

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

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

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

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

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

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

• Take DESCOVY with or without food.

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

“

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 September 2017

42 Cover Eric Leonardos Won Our Hearts When He Came Out as HIV-Positive on Reality TV—Now, as A&U’s Larry Buhl Finds Out, the Hair & Makeup Stylist Has Launched an Initiative that Promotes the Beauty of Doing Good

Departments

Features 34 Gallery Saul Bromberger & Sandra Hoover’s Photos Honor Long-Term Survivors

6

Frontdesk

8

Digital Footprints

10

NewsBreak

38 PrEP Champions Women of Color Speak Out About the New Prevention Tool

16

Ruby’s Rap

40 Unconditional Love Pets Are Wonderful Support Helps Individuals Face Life’s Challenges

20

Second Acts

23

Our Story, Our Time

27

For the Long Run

48 When We Mobilize In 1987, the March on Washington for Lesbian & Gay Rights Helped Create an AIDS Activism Template

28

Brave New World

30

Bright Lights, Small City

32

Just*in Time

50 The Power of the Positive Activist Josh Robbins Makes HIV Awareness Go Viral

viewfinder

lifeguide 56

Access to Care

57

Positive Justice

52 Coming Out of the Chrysalis Paul Thorn Pens a Toolkit for Survival

58

Destination: Cure

60

The Culture of AIDS

54 A Calling & More Carol Marsh Reflects on a Legacy of Care

62

Lifelines

64

Survival Guide

cover photo by Sean Black

A&U Frontdesk

Shear Success

S

imply put, “AIDS ain’t over…yet.”

But there has been enough good news lately, that I’d like to offer kudos to the hundreds of thousands of AIDS activists, patient advocates, HIV medical professionals, pharmaceutical scientists, government politicians, and employees of the thousands of frontline NGOs who are making the future end of AIDS a real possibility.

In a world full of relentless risk (from nuclear conflict on the Korean Peninsula to mass starvation in Yemen), with stressful images of the world coming across our smart phones, computers, tablets, and every other conceivable electronic device, even my grandchildren are worried about a world come undone; the world has always been a dangerous place, I tell them.

But recently Mother Nature has been uniting us all in such unique ways.

For my grandchildren know that the world is also a place of amazing things, like the recent solar eclipse. One of the best viewing places of this once in a lifetime event was St. Joseph, Missouri, my birthplace. It was featured on the Weather Channel as one of the top ten viewing places in the continental U.S. to “see” the eclipse. An hour before the event I called some of my cousins in the town most famous for the Pony Express and Jesse James; they had caught some of the panic being documented on every network and social media site. After all, St. Joe had tripled in size overnight. Part-time astronomers and science geeks had flocked to the upper northwest Missouri town to experience a moment in history that they could tell future generations about.

The point of all this is that miraculous sights don’t happen every day. But like the moonshot, and the eradication of polio on the planet, the AIDS challenge is just that: an opportunity for people from all walks of life to take the lead and make an end of AIDS a reality. When our leaders are barely talking to each other in the halls of Congress, when hatred gathers in Charlottesville but is quickly stamped out in Boston, it makes me, as an American living with HIV, realize that not everyone wants to hate and stigmatize those of us who want to thrive in spite of our differences. In watching the pictures of the

AMERICA’S AIDS MAGAZINE issue 275 vol. 26 no. 9 September 2017 editorial offices: (518) 426-9010 fax: (518) 436-5354

defenders of freedom on the Boston Common, there was a strength in the numbers that came out on that sunny New England day. The power of social media was there in the call-out. Get your neighbors, your loved ones, your parents and children to blockade the brutal few who think that their hatred will become contagious. Not a chance. Boston Strong, for sure.

One death—Heather Heyer’s—during the obscene march of the so-called altright, only goes to show how powerful a cause can become if we all support one another. Similarly, in American history all good causes start with an individual responding to a universal need to change. AIDS activism and breast cancer awareness campaigns, to name just two well-known medical crises, have brought about tremendous changes to the medical establishment. And for the common good.

This month’s cover story subject, Eric Leonardos, uses his expertise in hair and makeup toward the common good, having launched an initiative called Beauty Allies that encourages salon-based philanthropy.

He recently helped give women living with HIV/AIDS makeovers. He told A&U’s Larry Buhl: “Some were getting back into the workforce. Some experienced a lot of trauma. They shared their stories with me and I listened. What I got back was the experience of watching these women see their outsides begin to match their beautiful insides.” In this issue, we spotlight other individuals who have made a difference: Paul Thorn, who offers advice about emotional literacy when living with challenges like HIV; Josh Robbins, who keeps us up-to-date about HIV with his vlogging; and Carol Marsh, who started a residence for homeless women living with HIV/AIDS that continues to this day.

And while these individuals have modeled compassionate leadership, none of them would say we should seek a savior to solve problems for us. Their success lies in making all of us see that something like the fight against AIDS is stronger as a group effort. Let’s erect a statue to honor that!

DAVID WAGGONER

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

In Memoriam: Bill Jacobson, 1939–2005 Rhomylly B. Forbes, 1963–2011 • Chris Companik, 1957–2012 Nancy Ellegate, 1959–2015 A&U (ISSN 1074-0872) is published by Art & Understanding, Inc., 25 Monroe St., Suite 205, Albany, NY 122102743, USA. For A&U advertising information please call 518-426-9010; for subscriptions and address changes please call 518-426-9010; for letters to the editor and unsolicited manuscripts write A&U Magazine, 25 Monroe Street, Albany, New York 12210; fax 518-436-5354; or e-mail: mailbox@aumag.org. All unsolicited manuscripts that do not have a S.A.S.E. cannot be returned and will not be acknowledged. ©2017 Art & Understanding, Inc. ALL RIGHTS RESERVED. A&U may not be reproduced in any manner, either in whole or in part, without written permission of the publisher. A&U and the graphic representations thereof are the registered trademarks of Art & Understanding, Inc., a 501 (c) (3) nonprofit organization. Individual Subscription rates: $24.95 (12 issues). Institutional rates: $80.00 (12 issues). For subscriptions outside the USA and possessions, $30.95/Canada, $49.95/ international, payable in advance in U.S. currency. First North American serial rights revert to contributors upon publication. A&U retains the right to anthologize work in further issues, as well as in microform or reprinting on the Internet within the context of each issue. Statements of writers, artists and advertisers are not necessarily those of the publisher. Readers note: subjects and contributors to A&U are both HIV-positive and HIV-negative. In the absence of a specific statement herein concerning the serostatus of any individual mentioned in, or contributing material to, this publication, no inference is made with respect thereto and none should be implied. Letters written to A&U or its contributors are assumed intended for publication. Art & Understanding, Inc. assumes no responsibility or liability for unsolicited submissions and does not guarantee the return thereof.

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

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

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

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

What Is Mytesi?

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

Possible Side Effects of Mytesi Include:

Tired of planning your life around diarrhea?

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

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

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

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

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

Please see complete Prescribing Information at Mytesi.com.

NP-390-9

RELIEF, PURE AND SIMPLE

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

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

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

Should I Take Mytesi If I Am:

Pregnant or Planning to Become Pregnant?

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

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

What Should I Know About Taking Mytesi With Other Medicines?

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

What If I Have More Questions About Mytesi?

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

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

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

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@AmericasAIDSMagazine 8

As a thirty-three-year survivor (and undetectable), I often question “why me --- why was I spared?” Sometimes it feels unfair to those who went before me, but I always settle back into gratefulness—though, oftentimes, I have to remind myself to do so. I’m always looking for ways to help others deal with what I’ve gone through, but stigma is determined to interject its cruelness, and it pisses me off!

Nearing retirement, I’ve had an interesting and diverse career run in broadcasting, corporate communications, and event planning—and while I busy myself getting my Cabin Collinwood ready for AirBNB and the prospect of meeting some interesting folks from all over the place, I don’t feel I’ve achieved my “higher purpose” quite yet.

Better get on that—sooner than later.

Thanks to writers such as yourself, I can live vicariously through your life lens, and am hopeful my yet-to-be-realized ambitions will blend all of my life experiences—both the good and the not so good—and result in an outcome that is satisfying, purposeful and, of course, lots of fun!

Life keeps beginning again…but I’ve lost count of how many times! Thanks for doing what you do.

@au_magazine

Greg Wilson photo by Leroy Hamilton all other photos by Sean Black

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In response to Ruby Comer’s “inspiring” August 2017 profile of Greg Wilson, Jeffrey Link of St. Louis, Missouri, took a moment to share his thoughts:

@au_americas_aids_magazine A&U • SEPTEMBER 2017

newsbreak

NNewsBreak EWSBREAK End AIDS Coalition At the 9th IAS Conference on HIV Science in Paris, France, on July 27, 2017, Kenneth Cole [A&U, November 2011], amfAR Chairman of the Board and UNAIDS International Goodwill Ambassador, launched the End AIDS Coalition (EAC), a collaboration of leading AIDS experts, scientists, clinicians, policy-makers, faith leaders, businesses, activists and humanitarians working together to end the AIDS epidemic by 2030.

“We are at a ‘tipping point’ in the fight against AIDS, with a quickly-closing window of opportunity,” said Mr. Cole, EAC Founder. “If we do not act now, and act together, to gain control of this global epidemic, it may never be possible and the costs in both funding and human lives would be catastrophic.”

By approaching the global AIDS response holistically, the EAC hopes to increase collaboration, transparency and accountability in order to accelerate progress towards the UNAIDS 2016 Political Declaration to end AIDS by 2030.

Building on the work of partners, the EAC aims to focus the global AIDS response—linking research, resources and implementation—around one goal: to end the epidemic by 2030; UNAIDS Executive Director Michael encourage the aggregation and analysis of data from the global AIDS response to identify Sidibé and End AIDS Coalition (EAC) barriers and encourage efficiencies, with a focus on specific populations and locations at risk founder Kenneth Cole at the EAC launch (micro-epidemics); and inspire a movement to mobilize and engage the energy and creativity of the next generation, a critical step in achieving success over the next three to five years.

“By collectively focusing on a common goal through the EAC, we will be able to link research to funding and implementation, which, in turn, will accelerate the widespread use of innovation and expedite the end of the epidemic,” said Quarraisha Abdool Karim, epidemiologist and Associate Scientific Director for the Centre for the AIDS Programme of Research in South Africa (CAPRISA).

The EAC will launch a global campaign in 2018 to align the global narrative with targeted advocacy and inspire everyone everywhere to recognize the challenges and ultimately be part of the solutions. As their press release frames it, “To work together. To fight together. To win together. That’s the commitment of EAC and its partners. This is the beginning of the end of the AIDS epidemic.”

For further information and to join the EAC, visit: www.endaidscoalition.org and like and follow @EndAIDS2030 on Facebook and Twitter.

Despite the enduring misconception that HIV is a disease of the young, it is estimated that in countries with well-developed healthcare systems, almost half of all people living with HIV are fifty or older. In some countries, including the United States, that number has already surpassed fifty percent and is expected to increase to seventy percent by 2020. People fifty and older account for seventeen percent of new HIV infections, and are more likely than younger adults to be diagnosed with AIDS at the same time as they discover their HIV status.

And yet, according to Mark Brennan-Ing, PhD, director for research and evaluation at ACRIA, a non-profit HIV/AIDS research organization in New York City, the growing population of older adults with HIV—both long-term HIV/AIDS survivors and the newly diagnosed—is being overlooked. He implied that the stigma of ageism is responsible for this neglect.

At a symposium entitled “Ageism and Older Adults With HIV: A Source of Health Disparities?” at the 125th Annual Convention of the American Psychological Association (APA) in Washington, D.C., in August 2017, Brennan-Ing reported, “The lack of perceived HIV risk in late adulthood among older people themselves, as well as providers and society in general, inhibits investment in education, testing and programmatic responses to address HIV in an aging population. Ageism perpetuates the invisibility of older adults, which renders current medical and social service systems unprepared to respond to the needs of people aging with HIV infection.”

As many as two-thirds of all older Americans with HIV have experienced stigma due not only to the disease, but to their age. This stigma may be even more pronounced among gay and bisexual men because of the increased obsession with age and the internalized ageism within the LGBTQ community. “Stigma results in social isolation, either through rejection by social network members or self-protective withdrawal, leading to loneliness and, ultimately, depression…[and] makes people reluctant to disclose their HIV status, which could affect their healthcare treatment or prevent them taking precautions to reduce transmission.”

Brennan-Ing pointed out that there are opportunities at the community level for providers of health and human services to buffer or re-

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A&U • SEPTEMBER 2017

photo ©IAS/Steve Forrest/Workers’ Photos

Older Adults with HIV Overlooked

duce the impact of ageism for those who are infected or at risk for HIV, including training health providers in HIV screening, early diagnosis and initiation of antiretroviral therapy in older populations; prevention, education and outreach targeting older adults; treatment guidelines for older individuals with HIV; funding in line with the aging of the epidemic; and engaging communities, community-based organizations, and social service providers in outreach, mental health and social support.

LATTE-2 Study LATTE-2 study researchers have released results from a Phase IIb open-label study showing that viral suppression rates for a two-drug regimen of long-acting, injectable formulations of cabotegravir (ViiV Healthcare) and rilpivirine (Janssen Sciences Ireland UC) and a three-drug regimen in patients with HIV-1 are comparable.

Published online in The Lancet and presented at the 9th IAS Conference on HIV Science, the results of study, which had enrolled 309 participants, were based on ninety-six-week data. Participants were treatment-naive at the start of the study and given the three-drug regimen, which was an oral formulation and composed of cabotegravir plus two nucleoside reverse transcriptase inhibitors (NRTIs), until they had achieved viral suppression. Then the participants were randomized into one of three study arms for the maintenance period. The two-drug injectable was dosed once every four or eight weeks, while the three-drug regimen was a daily dose.

After ninety-six weeks, viral suppression rates for the two-drug regimen dosed every eight weeks (ninety-four percent) or every four weeks (eighty-seven percent) were comparable to the rate observed in patients continuing with a three-drug oral regimen (eighty-four percent). Adverse events were reported, but serious ones only affected six percent of patients receiving injectable treatment (none drug-related) and five percent of patients receiving oral cabotegravir (none drug-related).

Advances like this are important in today’s treatment landscape, where reducing pill burden and the formulation of more efficient methods of drug delivery like long-acting injectables arguably make it easier for patients to adhere to anti-HIV meds and potentially improve their health outcomes. Phase III results are expected in 2018.

SMART Rider #379 “Never doubt that a small group of thoughtful committed citizens can change the world. Indeed it is the only thing that ever has.” Margaret Mead’s quote ends Frank Kramarik-Luth’s SMART Ride (Southern Most AIDS/HIV Ride) fundraising page appeal and it’s a reminder that individuals can make a difference in the fight against AIDS. The Fort Lauderdale-based advocate certainly felt emboldened enough to tackle The SMART Ride for the first time.

The SMART Ride is a 165-mile bicycle trek from Miami to Key West over two days (November 17–18, this year). Participants number in the hundreds and are each asked to raise at least $1,250, but Frank is dedicated to raising more than the minimum. All proceeds are given to Florida-based AIDS service organizations and targeted toward prevention, education, and direct services. Over the years, the ride has raised $8.5 million.

An environmental scientist by trade, the married thirty-five-year-old Elmira, New York native is currently studying for a master’s in ecological restoration. A&U caught up with the self-professed science “geek” (with an “obsession for honey bees”) and AIDS advocate to learn why he rides.

photo courtesy F. Kramarik-Luth

A&U: This is your first time as a participant in The SMART Ride. Why did you decide to ride?

Frank Kramarik-Luth: I decided to ride for many reasons. The first was the challenge. It is insane to think about riding a bike over 160 miles and surviving! I drive to Key West and it is a long three to four hours to do that! (I guess you can just call me competitive; I like to push myself hard). My second reason is that, as a guy who is positive, I had organizations like these that helped me out when I first discovered that I had the virus. I wouldn’t have known what to do if they were not around. I see a lot of organizations that step up and help the Poz community, but instead of donating and forgetting, I wanted to actually do something and make that difference and actually be a part of the poz community.

A support network is key when positive. What does your training regimen look like?

My training has been awesome! I pushed myself to join a gym and got myself onto a bike. I started with ten miles in sixty-five minutes (slow for my taste). I then got myself a trainer, who has been working on my arms, chest, abs, legs and shoulders. (I am a small built guy and have to bulk myself and not tone myself, as I do not want to lose weight, so my training is harsh). I go to the gym five days a week after work and before I eat. On weekends, I pick one day and ride my bike. I am actually up to fifty miles on my bike. I think it’s easier to ride outside rather than the gym; I enjoy the distractions.

That sounds intense. Have you found your mental or spiritual state transforming as well as you look ahead to the ride?

My mental state has definitely been transforming with this journey. When doing something like this ride and with all of the training involved, it takes me back to when I was in boot camp in the Navy. You feel physical pain while training. I have to remind myself that pain means I am succeeding and constantly telling myself “mind over matter.” Spiritually I am growing with this ride. I am meeting people who share this passion for HIV/AIDS awareness. I am finding the community come together for awareness to this cause. When I tested positive for HIV my mental and spiritual states both crashed. I gave up—I saw a death sentence. It was because I was not educated. This ride is my way of showing people who might have just tested positive that life is not over, being poz is like a beginning, and life can only get better.

To support Frank Kramarik-Luth, log on to: http://bit.ly/2x1LWuX. For more information about the ride, visit: www.thesmartride.org.

SEPTEMBER 2017 • A&U

11

by Ruby Comer

Klare DaValle

16

I invite my long time galpal, whose favorite film is Gentlemen Prefer Blondes, to be a part of this column, as I wanted to get an active woman’s (of a certain age like myself) point of view. Statistics show that more than half of Americans living with HIV/AIDS are fifty and over.

Ruby Comer: As you know, Sugar, this epidemic has touched many different facets of the population. It’s scary that people at our tender age are being infected.

Klare DaValle: Oh Ruby, it’s very disturbing. [Klare chokes up with emotion.]

Tell me how you protect yourself !

I really believe in wearing condoms— plain and simple. And you know this, I prefer to be in a relationship before I have romantic sexual encounters.

I wish I could say that. [We chuckle.] Since you are currently on the dating scene, how do you bring up the sensitive subject of STIs with a potential partner?

I just ask, “When was the last time you were tested?” Again—plain and simple. I also get tested at least once a year. There are so many convenient test sites these days.

You can even do it [in the retail store that benefits AIDS Healthcare Foundation] Out of the Closet. They also provide condoms!

When were you first tested?

I started in the eighties when I was having breast implants. They always test before plastic surgery.

Oh I remember that time, yes. Girl, you are one sexy broad! [She smiles.] You’ve volunteered for Project Angel Food [a nonprofit that delivers food to homebound individuals], Out of the Closet, and participated in several AIDS Walks. Why do you do this?

What motivates me is the realization that I might help change someone’s life.

[She takes a sip of water that is supplied fresh every day by the hotel in a glass container.] I always want to help any way I can.

In so many ways I get so much more out of it, Ruby….

A&U • SEPTEMBER 2017

Ruby illustration by Davidd Batalon; photo by Harry Kiernan, ASB

P

inch me. Tell me this is not a dream!

My Los Angeles girlfriend Klare DeValle and I are sipping Jose Cuervo on the Costa del Sol here in Malaga Spain, as barely clad Spanish men strut by on the beach. These Spaniards are sooo intoxicating. WHEW! This charming city can be compared to the City of Angels with its weather and geographical surroundings (think Hollywood Hills), but it certainly has a distinctive European Old World flavor, and a refined culture.

Yesterday I spoke at Stop SIDA, a national AIDS organization. The topic was “The Price of PrEP,” which dealt with possible side effects (headache and nausea), long-term effects (don’t know), and the realization that the daily pill does not prevent other STI’s.

Klare accompanied me. She’s been involved with our community since the beginning and has lost many friends, like all of us. A former flight attendant (twenty years), the epidemic broke out when she began working for TWA. I know, I know, you kids who are under a certain age have no idea what this is. Trans World Airlines was iconic in the industry, opening its doors in 1924, and closing them in 2001.

Klare has also modeled, having several ads published in Vogue. She hails from north of San Francisco where she grew up on her folk’s winery, The Ghilarducci Family Vineyard. Klare’s parents are from Italy’s luscious Tuscany area.

Constantly being compared to Pamela Anderson, or Dolly Parton, or even Victoria Gotti from The Real Housewives of Beverly Hills, Klare and I are now lounging in our suite at Hotel Mariposa, not far from the Mediterranean Sea. Our bathing suits are flung over the bathtub to dry, and we’re clothed in our colorful Culottes, taking in the summer breeze emanating from our two petit balconies, just above Casas de Campos Calle.

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

You are always so vivacious and upbeat, and I know this comes from your upbringing. Tell me about your Italian roots.

We always had big gatherings at the house, particularly on Sundays after church. My family had an open door policy. Just drop by! There was always lots of food and lots of wine.

Talk about your hairdresser, Frank, who you lost early on to AIDS. Oh…my. We were extremely close.

We’d hang out together even when I wasn’t getting my hair done. He would make me laugh so hard! I remember one time, soon after he was diagnosed, he said, “Oh, I want to take you shopping and I want to

less to the point that I had to get a new hairdresser. Frank passed away. He had a partner who was so devastated. I will never forget the sorrow.

God, I recall those days, Klare. Say, share with me a celebrity anecdote from your days of flying.

Okay. Zsa Zsa Gabor was on a trip from Washington, D.C., to San Francisco. She was traveling with her dog, Macho. Of course she was in first class and we were on the new Boeing 767.

She asked, “Are you married? You are very beautiful.” I said no. After the movie started, I was eating my canned tuna and baked potato. Zsa Zsa comes up holding her dog and asked where I got that food. I told her that I bring it from home; that I don’t eat airline food. She said that was smart, and proceeded to tell me delightful humorous stories about her career. Toward the end of the flight, she began asking passengers if they were

Hotel Mariposa, Malaga, Spain

take you to lunch.” So we go to Sunset Plaza [a ritzy area located on Sunset Boulevard]. We were both having a cocktail. He then pulls out a cigarette and smokes it. I say to him, “Frank, you really shouldn’t be smoking.” And he replied, “What the hell does it matter? I’m going to die soon anyway.” I told him that he can’t think that way, that there’s always hope.

After that, he was going to work less and

18

months from reaching the hundred-year mark! [Klare nods.] What…a…lady—and an early AIDS activist. She heeded Elizabeth Taylor’s call when Taylor was rounding up her sho-biz friends to help those in need and to establish amfAR. [I pause.] You were raised Catholic and today you have a firm foundation in faith. What do you do daily to keep spiritually in shape?

Back in 1989, a dear friend of mine, Emanuelle, changed my life by gifting me with a subscription to Unity’s monthly magazine, Daily Word. I read it every day. [She goes over to the nightstand and fetches the publication. She sits on the comfy bed and reads the quote for today]: “I hold a vision of harmony and goodwill for the world.” [Klare calmly looks off then flashes a beaming knowing grin.]

Dare to watch fair Klare, as she shares and bares, when she pairs with Dann and Kelly on a rare episode of In Bed with Dann & Kelly: http:// dannandkelly.com/episodes/ep-23-klare-davalle-wine-connoisseur/.

available to date me! [Klare shakes her head as she rolls her eyes.]

How cute! She died last December, just

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

A&U • SEPTEMBER 2017

hotel photos © Andreas Grunau; photo courtesy Klare DeValle

Tell me about one of your volunteering experiences.

Oh my God. As I said, it’s almost selfish since I am having so much fun. Like in the kitchen at Project Angel Food, I wear a bonnet hairnet, gloves, and join the rest of the group in singing. [She scoots to the end of the white-tufted leather sofa to sniff the fresh flowers. Klare gets a surprise.

Even though they look so real, they’re not!]

I can’t believe it, Ruby! [I grin, knowingly.

She returns to subject at hand.] You know, I have met the most incredible people through the years volunteering and many are still my friends today.

Bringing hearts together since 1998

P zMatch.c m

viewfinder

Lost & Found

by

Mark Olmsted the disorientation of survival calls

for us to create new ways to navigate

20

ahead of schedule. A cancer survivor could say the same, certainly, but not while most of his or her circle of friends was also sick and dying.

We had to be the support system for others as our own support system was decimated. Fear, grief, and isolation battered us month after month for years.

PTSD is a tempting diagnosis for many of us, but it is so heavily associated with the aftermath of kinetic violence that claiming it as our own feels like a wrong fit. Ours was a different kind of war, a trauma just as real but one that unfolded in slow motion. Likewise, we eventually got relief in slow motion, too. We weren’t liberated from one day to the next, but unoccupied, one house at a time. Who among us started to trust the cocktails would really work until the third or fourth time we tested “undetectable?” How long was it before no one we knew had died that year?

What I think almost all long-term survivors have to deal with is a profound sense of disorientation. We thought we would live a normal life span, then thought we would not, then slowly realized we would. (This psychic yo-yo of expectations may even have had some neurological effects. It’s a possibility certainly worth investigating.) In a final ironic twist, we are arriving at the age where many of us would have started to die the same way most people have always died—cancer and heart attacks and accidents. And if you’re like me, you bristle at the notion that all that work you did to embrace your unexpected second act does not mean your play is going to have a longer run. I reclaimed my inner thirty-five-year old, but fifty-nine is looking at me in the mirror.

Luckily I know how to keep my pity parties short and private—I think we’ve all learned that skill. And my gratitude

always bests my resentment when they go toe-to-toe. But this is the second time in my life when I have no time to waste, so I feel the need to operate with a maximum awareness of all of the factors influencing my decision-making, and that includes the possibility that my inner GPS may have a permanent glitch or two in its software. That’s not my fault, but it is my responsibility to bring the latest maps along for the ride.

Sometimes I forget, and that’s okay too.

Just because I don’t always know where I’m going doesn’t mean I’m lost.

As a long-term blogger for several prominent websites, Mark writes extensively about the intersections of the personal and political, whether the subject is HIV, the criminal justice system, or creativity as the ultimate expression of personal spirituality. He recently published a memoir about his experience in prison, Ink from the Pen. Visit his website at: www. lavenderisthenewblack.com.

A&U • SEPTEMBER 2017

photo by Sean Black

I

came out very early, at sixteen, in 1975.

I spent my college years in Manhattan, availing myself amply of every delight that carefree gay playground offered at the time. When HIV appeared on the scene, I was already old beyond my years—or so I thought. While there was the premature jadedness that came from sleeping with way too many strangers, way too young, it didn’t compare to the bonetired despair that came from having to bury way too many friends, way too young.

When my positive status was confirmed, my own proximity to death added another layer of intensity to the sensation of living outside of a life’s typical chronology. By the time I hit forty, I was so used to this temporal dyslexia that “normal” thinking was as unfamiliar to me as a language I hadn’t spoken in twenty years.

I’ve been struggling to regain fluency in it ever since.

Like many long-term survivors in those fairly hopeless early years, I found every advantage I could in the prospect of early death—reframing it as never having to suffer the disappointments and indignities of growing old. But living for the moment (as opposed to “in” the moment) had the effect of reinforcing my shallowest values: grabbing at every chance for artificially-induced euphoria; getting as much validation via sex as possible; aiming for instant prosperity instead of building it up.

Eventually, I found a marvelously efficient vehicle to satisfy all three desires: using and selling crystal meth. I was the dealer who answered the phone on the first ring and had a sling over his bed. I was very prosperous, and very popular.

My reckless disregard for consequences eventually led to arrest and prison.

While I certainly didn’t consciously choose such a drastic path, I see now that continuing to take such obviously insane risks probably had a lot to do with a desperate need to resolve the suspense that has been killing me when AIDS hadn’t. In other words, prison was the closest thing to death I could find without actually dying.

Most of us who seroconverted in the nineties, and all of us who did so in the eighties, knew the intense fear of confronting the very real possibility of death way

SOMETIMES, OUR HIGHEST HEIGHTS HAPPEN

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

Checking In

as part of your hiv self-care, take steps to address your mental health

illustration by Timothy J. Haines

I

finally went to see a therapist.

For Black folks, mental health isn’t always something preached around the Sunday evening dinner table. As a race that has always been oppressed in this country, the mental capacity to endure pain has traumatized us generationally, to the point of adaptation in our genetic makeup as a means of survival. However, one’s Blackness can’t outweigh the importance of checking in with their own mental health, and seeking the right professional help if need be.

I worked at an HIV organization for the past two years, which housed supportive services including mental health treatment. Over those years, I had become really good friends with the head clinician, an older Black woman who, from time to time, would allow me to peek my head in and ask a few questions before returning back to work. It was about the middle of June, when I was dealing with a few issues at the same time, when I finally decided that enough was enough and that I would seek the help of an expert.

It was a Thursday afternoon, and we had just finished the mandatory lunch hour. The clinician happened to have a cancellation and I knew that the universe was giving me the perfect opportunity to handle my mental state that I left aside for far too long. We engaged in some small talk before I finally told her that I had been dealing with anxiety, like, really bad, over the past few weeks and wasn’t quite sure as to how I should process it. I explained that I had for a long time been leery about talking to a therapist, because I always correlated mental health with mental illness, something I never wanted to be thought of as having.

She closed the door, and my first real session began. Some background info: I am HIV-positive for almost seven years now. This was something that was once hidden, but I now publicly and openly talk about in every space and venue where my voice is allowed. I’ve written fifty-plus articles on the subject, been a part of several campaigns, and even plan on taking a bigger role in fighting the epidemic in the coming months. Outside the virus, I am a public figure. I do activism work around SEPTEMBER 2017 • A&U

intersectional Blackness, specifically targeted around the rights of the LGBTQIA community. I am also most known for my journalism, as I’ve written on a range of topics for several major publications. I also help mentor queer black males who attend HBCUs and raise scholarship money on their behalf. All in a day’s work, but I digress.

Throw all of that in a bag and some days are just overwhelmingly heavy as hell.

To the point that all I could do was stay in bed, while on social media pretending that everything was going okay. Hypervisibility is a double-edged sword as it is necessary for my work, yet can be detrimental to my self-care. The goal of my work is to get the message across to as many people as possible about a topic that I am writing on.

However, that opens you up to an audience of comments that can be filled with attacks, which at some point does affect the psyche.

The conversation with the clinician was eye-opening, as, for the first time ever, I really interrogated how past trauma and experiences manifest themselves as an adult, must be dealt with. I reflected on the fact that I never blinked once after diagnosis nor grieved, and that it’s okay for me to sometimes be upset that I have to take a pill every day and watch my health so closely. Most importantly I realized that I was not built to have to deal with all of my problems on my own, and that having an

outlet is necessary to release trauma from the body in order to allow good energy in.

I find myself at times staying bottled up.

Letting all of the things that I am dealing with build a wall, that at times I don’t allow to be penetrated. That wall then creating a block on allowing me to be as vulnerable as I need to be, thus stopping me from building intimate relationships, with others and myself.

Mental health is not something to be played at. I like to think that I am strong enough but sometimes, the wounds are too deep and we need someone to help patch us up. Mental health issues are nothing to be ashamed of, yet many of us go years without it, only doing more damage to ourselves in various areas of our life. It is important that when we look into ourselves, that we are properly processing the blows of society, rather than letting them build up until we succumb under the weight.

I will definitely be back in the near future to keep working on my mental health.

Sometimes the life that needs saving is your own. It’s okay to have someone help you along the way.

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

23

WHAT IS ODEFSEY®?

ODEFSEY is a 1-pill, once-a-day prescription medicine used to treat HIV-1 in people 12 years and older. It can either be used in people who are starting HIV-1 treatment, have never taken HIV-1 medicines before, and have an amount of HIV-1 in their blood (“viral load”) that is no more than 100,000 copies/mL, or in 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. ODEFSEY combines 3 medicines into 1 pill taken once a day with a meal. ODEFSEY is a complete HIV-1 treatment and should not be used with other HIV-1 medicines.

ODEFSEY does not cure HIV-1 infection or AIDS. To control HIV-1 infection and decrease HIV-related illnesses, you must keep taking ODEFSEY. 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

Liver problems can also happen in people who have not had liver disease. Your healthcare provider may do tests to check your liver enzymes before and during treatment with ODEFSEY. •

•

•

•

What is the most important information I should know about ODEFSEY? ODEFSEY may cause serious side effects: • Worsening of hepatitis B (HBV) infection. ODEFSEY is not approved to treat HBV. If you have both HIV-1 and HBV and stop taking ODEFSEY, your HBV may suddenly get worse.

Do not stop taking ODEFSEY without first talking to your healthcare provider, as they will need to monitor your health.

Who should not take ODEFSEY?

Do not take ODEFSEY 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 ODEFSEY. 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 ODEFSEY?

Serious side effects of ODEFSEY may also include: • Severe skin rash and allergic reactions. Skin rash is a common side effect of ODEFSEY. Call your healthcare provider right away if you get a rash, as some rashes and allergic reactions may need to be treated in a hospital. Stop taking ODEFSEY and get medical help right away if you get a rash with any of the following symptoms: fever, skin blisters, mouth sores, redness or swelling of the eyes (conjunctivitis), swelling of the face, lips, mouth, or throat, trouble breathing or swallowing, pain on the right side of the stomach (abdominal) area, and/or dark “tea-colored” urine.

•

•

Depression or mood changes. Tell your healthcare provider right away if you: feel sad or hopeless, feel anxious or restless, have thoughts of hurting yourself (suicide) or have tried to hurt yourself.

Changes in liver enzymes. People who have had hepatitis B or C or who have certain liver enzyme changes may have a higher risk for new or worse liver problems while taking ODEFSEY.

•

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 ODEFSEY. 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 ODEFSEY if you develop new or worse kidney problems.

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

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

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

Bone problems, such as bone pain, softening, or thinning, which may lead to fractures. Your healthcare provider may do tests to check your bones.

The most common side effects of rilpivirine, one of the medicines in ODEFSEY, are depression, trouble sleeping (insomnia), and headache.

The most common side effect of emtricitabine and tenofovir alafenamide, two of the medicines in ODEFSEY, is nausea.

Tell your healthcare provider if you have any side effects that bother you or do not go away.

What should I tell my healthcare provider before taking ODEFSEY? •

•

•

•

All your health problems. Be sure to tell your healthcare provider if you have or have had any kidney, bone, mental health (depression or suicidal thoughts), 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 ODEFSEY 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 ODEFSEY with all of your other medicines.

If you are pregnant or plan to become pregnant. It is not known if ODEFSEY can harm your unborn baby. Tell your healthcare provider if you become pregnant while taking ODEFSEY. 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 ODEFSEY, including important warnings, on the following page.

Ask your healthcare provider if ODEFSEY is right for you.

ODEFSEY.com

ODEFSEY does not cure HIV-1 or AIDS.

SHOW YOUR

RADIANCE

ODEFSEY is a complete, 1-pill, once-a-day HIV-1 treatment for people 12 years and older who are either new to treatment and have less than 100,000 copies/mL of virus in their blood or people whose healthcare provider determines they can replace their current HIV-1 medicines with ODEFSEY.

IMPORTANT FACTS

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

(oh-DEF-see) MOST IMPORTANT INFORMATION ABOUT ODEFSEY

POSSIBLE SIDE EFFECTS OF ODEFSEY

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

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

• Severe skin rash and allergic reactions.

• Depression or mood changes.

• Changes in liver enzymes.

• Changes in your immune system.

• New or worse kidney problems, including kidney failure.

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

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

• Bone problems.

ABOUT ODEFSEY •

•

ODEFSEY is a prescription medicine used to treat HIV-1 in people 12 years of age and older who have never taken HIV-1 medicines before and who have an amount of HIV-1 in their blood (“viral load”) that is no more than 100,000 copies/mL. ODEFSEY can also be used to replace current HIV-1 medicines for some people who have an undetectable viral load (less than 50 copies/mL), have been on the same HIV-1 medicines for at least 6 months, have never failed HIV-1 treatment, and whose healthcare provider determines that they meet certain other requirements.

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

Do NOT take ODEFSEY if you: • Take a medicine that contains: carbamazepine (Carbatrol®, Epitol®, Equetro®, Tegretol®, Tegretol-XR®, Teril®), dexamethasone (Ozurdex®, Maxidex®, Decadron®, Baycadron™), dexlansoprazole (Dexilant®), esomeprazole (Nexium®, Vimovo®), lansoprazole (Prevacid®), omeprazole (Prilosec®, Zegerid®), oxcarbazepine (Trileptal®), pantoprazole sodium (Protonix®), phenobarbital (Luminal®), phenytoin (Dilantin®, Dilantin-125®, Phenytek®), rabeprazole (Aciphex®), rifampin (Rifadin®, Rifamate®, Rifater®, Rimactane®), or rifapentine (Priftin®).

• Take the herbal supplement St. John’s wort.

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

HOW TO TAKE ODEFSEY • •

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

Take ODEFSEY with a meal.

GET MORE INFORMATION •

• •

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

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

The most common side effects of rilpivirine, one of the medicines in ODEFSEY, are depression, trouble sleeping (insomnia), and headache.

The most common side effect of emtricitabine and tenofovir alafenamide, two of the medicines in ODEFSEY, is nausea.

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

BEFORE TAKING ODEFSEY Tell your healthcare provider if you: • Have or have had any kidney, bone, mental health (depression or suicidal thoughts), 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 ODEFSEY.

ODEFSEY, the ODEFSEY Logo, LOVE WHAT’S INSIDE, SHOW YOUR RADIANCE, GILEAD, and the GILEAD Logo are trademarks of Gilead Sciences, Inc., or its related companies. All other marks referenced herein are the property of their respective owners. Version date: April 2017. © 2017 Gilead Sciences, Inc. All rights reserved. ODEC0087 07/17

Meet Tommy, My Tumor

by

Hank Trout when you’re an lts, it’s always one

thing after another

In the 1970s, I sometimes woke up with a knot on the back of my head, just behind my right ear, about half the size of a golf ball. It hung around for only a few days at a time and then left with no residual effects, so I figured there was no cause for alarm—it was a curiosity more than a worry. Still, the lump reappeared so frequently that I named it.

Brenda the Brain Tumor.

Recently, I acquired a new friend to take Brenda’s place.

In April, during a twoday hospitalization after a very scary asthma attack, I received half a dozen or more shots of a Prednisone-like steroid every day to help my breathing.

The accumulation of all of those steroids caused me to swell up like an overstuffed sausage, particularly my feet and ankles.

I noticed, and remarked to the doctors, that my stomach was also swelling.

They assured me that this is normal and that once I was out of the hospital and weaned off the steroids, the swelling would disappear.

My feet and ankles quickly returned to their normal size. Three months later, however, my stomach still had not. My normally flat stomach protruded, from just below my sternum to just above my navel—I looked as if I had swallowed a soccer ball. This was quite alarming, as well as painful and very frustrating.

After three months of treating the bloating with heavy-duty laxatives, a probiotic with “over 900 billion active bacteria,” dietary changes, and even Xifaxan (used to treat E. coli), all with no effect, I finally convinced my GP to send me to a gastroenterologist who ordered a CAT scan.

Meet Tommy the Tumor, who took up residence in my appendix.

More accurately, Tommy was an appendiceal mucocele. According to SEPTEMBER 2017 • A&U

Cancer.net, “Mucoceles are swellings or sacs from swelling of the appendix wall, typically filled with mucous.” Most mucocele tumors are benign, but the doctors won’t know until they biopsy Tommy. Unlike Brenda, who visited for just a few days and then quietly packed her skirts and moved on, all of her own

volition, Tommy stubbornly required a forcible, surgical eviction.

If I seem rather flippant about having a possibly malignant cancerous tumor on my appendix that had to be surgically removed before it erupted, it’s because I am. I have to be flippant about it. I know of no other way to deal with the constant barrage of bad health news I’ve gotten for years—and still retain the shards that are left of my sanity.

If you ask most Long-Term HIV/ AIDS Survivors about their health, they will tell you, it’s always one damned thing after another. In just the past year, I have been hospitalized twice due to asthma and COPD. I have made a half dozen or more trips to the emergency room because I couldn’t breathe or had experienced symptoms of a heart attack.

I have spent literally thousands of dollars in co-pays, ambulance rides, and medications just since Thanksgiving. I have been house-bound for months at a time with three compression fractures in my spine (to make a matched set with the three herniated discs at the base of my spine, I suppose), with bronchitis, with abdominal pains, with chronic fatigue.

I had already gone through one surgery this year, on my back, and now I faced another one to evict Tommy.

If it’s not one thing, it’s your mother.

Err umm, another—it’s another.

See! I can’t help it—sarcastic, flippant.

Being flippant is the only way I know to deal with this never-ending parade of disruptive, debilitating, expensive health problems. The alternative is to ball up into a blubbering fetal lump for several hours a day and sob my eyes out. I have no problem with crying—I’ve cried at least once a day, every day, for the last thirty-six years, but usually for others, only rarely for myself.

I’m not good at the “poor, poor pitiful me” routine.

Besides, my fiancé Rick would find my sobbing incredibly unattractive.

Again: It’s how I push on.

It’s how I force myself to fast for a day and drink a gallon of GaviLyte-C before a colonoscopy and endoscopy, and then again before surgery; it’s how I faced that surgery, my eighth in sixty-four years, without appearing to worry about waking up afterward. It’s how I pry myself out of bed most mornings, how I will one foot in front of the other during the day.

Flippancy is the face I put on to cover other faces.

Flippancy is where sickness has taken my mind.

I know I am not the only Long-Term HIV/AIDS Survivor whose mornings usually begin with asking Dorothy Parker’s withering “What fresh hell is this?”

I just wish the Universe didn’t treat the question as such a personal challenge.

Addendum: I was going to call this a “Post-Mortem” but that seemed rather fatalistic and scary! So let’s just cut to the tumor, shall we? Doctors successfully evicted Tommy without incident via laproscopic appendectomy on Wednesday 2 August.

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.

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illustration by Timothy J. Haines

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ickness will surely take the mind Where minds can’t usually go —Pete Townshend, “The Amazing Journey,” The Who’s Tommy

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Dear Dan Savage

when two opinion columnists have different audiences & considerably different pay scales

Beta Boy: Hey, can I ask you a question?

BottomBud: Sure, what’s going on cutie?

Beta Boy: How long have you been positive?

BottomBud: About 20 years.

Beta Boy: Do you like it?

PAUSE Notice the phrasing of that question?

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“Do you like it?” As if it’s something to enjoy—something to choose, something to do for fun. So I began to poke at the edges of his mental health the way you would poke at a glistening jellyfish that had washed itself onto shore, making sure he was not full of poison and pain, before carefully putting him back in the ocean to swim free.

What I found is that he was wondering if he should just actively “become positive” so that he “can have the kind of sex” that he wants. He did not want to use condoms, and he did not know that you could use PrEP (Truvada) WITHOUT condoms, and still be protected. He was young and beautiful and stupid, and probably living with more mental issues than anyone could assuage over the Internet, but he had never met another Black man who was HIV-positive and honest about their sexual behavior.

And in his mind, that meant that I was probably into doing harm. But I made a promise to myself (many years ago) to do no harm: I am undetectable, I see my doctor every three months, and (as much as is in my power) I make sure that my sexual partners are informed and cognizant of all risk. Which, when it comes to HIV, is ZERO. I’m a safe slut!

So I can dress in the grungiest outfits, take as many drugs as I need, and have as many partners as I can count. But guess what, Mr. Savage? It’s still safe!

And it still DOES NO HARM. But I’m sure you know this. You are smarter than

that. Something has made you critical of our most beautiful, lost, and fragile....

And I am sorry for that. Because some of us are still here “in these trenches” dealing with HIV stigma, PrEP shame, and balancing our Bacchanal needs with our inner moral compass.... And I may not have a podcast with the potential to reach millions, but I can reach this ONE. “Hello my beautiful gangly Black boy on the Internet. I know the information is contradictory. And I know they keep telling you to use a condom. And I know that you won’t. And I know you think that means you have to be careless, and deviant, and eager to do self-harm.

(Because that’s the purple “poplar” brush they paint you with.) BUT YOU DON’T HAVE TO BE! Take your pill.

(And then do whatever the hell you want!

Depending on the laws in your state.)

Or here’s a tip: Something we did in the nineties—make the guy PROVE he is “undetectable” by showing his recent lab results. I keep mine on my bedside table (in case any of my partners ask.) No one ever asks. But you, my dear beautiful nipple-pierced Black boy with lips like cherry trees, you can ask.... And I will never EVER judge you.”

Love and Light.

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

A&U • SEPTEMBER 2017

illustration by Timothy J. Haines

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was going to write a rant against Dan Savage. Dan Savage has a popular advice column that is progressive and sex-positive and funny. It is something I would recommend to anyone that is trying to broaden their sexual vocabulary. He is gay and White and left-wing and smart; and extremely problematic. He was the guy who started the “It Gets Better” campaign and recently had a brilliant and delightful network TV show that was “pro-homo,” subversive and adorable enough to make me cry ugly-tears on more than one occasion. So he does good work.

I am a fan.

But the other day on his podcast, he went on a tirade about crystal-meth users and guys who have condomless sex with strangers; and his language was condescending and judgmental and stigmatizing; and this is not his first time.... And as an undying defender of my wild-eyed “bareback” drug boys, I was livid! I said a prayer to the patron saint of beautiful broken boys; covered myself in war paint; and taped my fingers, wrapped my wrists, and flicked my nose like Bruce Lee before a fight.

“I’m calling you out, Dan Savage.”

Sex columnist to sex columnist....

But while I was mulling over what I would craft to destroy, embarrass (and subtlety compliment) this bright pink beacon for our community, I was sent a message by a gorgeous little twenty-four year old Black boy with pierced nipples and gangly arms that read, “Hey, can I ask you a question?” This I have seen pass across my screen more than a hundred times, and nine times out of ten it has something to do with HIV.

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Tears & T-Cells my diagnosis was a quiet bomb, but the aftershocks still resound

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or, in the worst case scenario, the first opportunistic infection. That was the only thing that unnerved me. It seemed like a dangerous game of chicken. I even broke the news to my mother over the phone.

Once I explained what my doctor had said, that I would live a normal life span, she was surprisingly calm. I had expected a total meltdown, so this was good news. My partner insisted on an available blood test that would roughly date my contracting the virus. Understandably, he wanted to be certain that he himself hadn’t infected me.

That test showed that I was positive years before we were together which gave him much relief.

My T cells dropped slowly but steadily.

When they approached 250, I’d had quite enough. This was a game I could not play any longer. I conveyed this to our doctor and friend and he agreed to prescribe HAART. I was more than a little relieved. I was ready. It was time.

Prescription in hand, I set out for the pharmacy. My relative calm and relief began to be replaced by something else entirely. At first, it was something close to shame. The man at the pharmacy would certainly know what these drugs were for.

Would he be judging me? Never mind that it was a pharmacy in the heart of West Hollywood and that he had seen such prescriptions hundreds of times. I felt marked

with a scarlet A. The only person that was judging me, however, was myself. Then there was the shock of seeing the actual price of my medication when he rang it up, albeit before my excellent insurance covered the total.

I took the white paper bag full of medication with me to my car. I had rarely taken anything other than an occasional antibiotic in my life. It’s hard to describe how I felt other than to say I was in some kind of shock. Now, doctors prescribe medication immediately upon diagnosis; there isn’t much time to get used to the idea. The changes are immediate. But then, months after I got the news, it was finally hitting me—I would be reliant on two medications to keep me alive for the rest of my life. Nothing would ever be the same. I sat behind the wheel of my SUV in the parking lot and wept. I rarely shed tears much less wept in such a dramatic fashion. Somehow, it seemed appropriate.

Dramatic and overwrought? Yes, but still warranted. In the coming years, it wouldn’t be the last time.

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

A&U • SEPTEMBER 2017

illustration by Timothy J. Haines

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ell, as you know, I have your test results and I’m afraid it isn’t good news. You’re positive.” Bad news from another handsome man, this one a silver-haired fox and also the long-time physician and a good friend of my partner.

He met my steady gaze, “Are you ok?”

“Well, it’s hardly shocking,” I replied.

“But if you hand me that box of tissues you keep eyeing, Rick, I’ll scream.” In the moment, it felt more important to me to put him at ease with an easy laugh than to accept any comfort myself. I got the laugh I’d intended, albeit a nervous one.

And the fact was that it wasn’t exactly a shock. A lifetime of caution, borne of witnessing the height of the plague in New York, had slipped into carelessness and a desire for something different, a new sensation enabled by a liberal dose of drugs and alcohol, hardly a recipe for caution or prudence. Just a few months before, my partner had gotten this same news from Rick, although his reaction to it was altogether different. He had been shocked, and while I was as supportive as I knew how to be, I had little tolerance for the self-pity he wallowed in. My thinking was that if he knew that he had been taking risks, as we both had, both together and separately, the news that he was HIV-positive could hardly be surprising. Upsetting, yes, of course, no one deserves HIV simply for expressing themselves sexually.

But, on the other hand, as gay men of a certain age and experience, we knew all too well what might happen if we didn’t take precautions. So, yes, I was hardly shocked. To put it all in context, this was 2003; people were not dying at the rate they were in the eighties. What had been a possible death sentence just seven years earlier, was hardly that now but still, it was life-altering news.

I floated along on this revelation and the salient facts surrounding it for months.

There were no immediate changes in my healthcare other than a battery of blood tests that soon leveled out to a visit to the doctor every three months to monitor my T cells and viral load. The treatment model of the time called for medication only after one’s T cells fell below 200

Please join us for the

30th Provincetown Swim for Life 2017

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

A 1.4 mile swim & kayak across magnificent Provincetown Harbor

Saturday, September 9 Provincetown Swim for Life & Paddler Flotilla

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

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

Dear Justin,

I’m very scared; I don’t know who to talk to. I don’t like using condoms but I am on PrEP. So, I’ve protected myself from HIV. I know that I’m open to being infected with other sexually transmitted diseases. I have made an effort to visit my primary care physician more often than just twice a year. However, I’ve developed a rash and it is getting worse. I visit my doctor next week but I wanted to reach out to you to see what you think.

I think I may have gotten syphilis because, in the Florida area where I live, syphilis infections have increased.

Do you think this is because of PrEP [use without condoms]? I’m thinking of going back to condoms because I’ve never had a sexually transmitted disease before.

—Fearful Florida Dude I hope all is well. Let me first thank you for writing in.

Let’s start with your suspicion of a possible syphilis infection. Since you are on PrEP, doctors will require you to come in at least once every three months to make sure that, if you have been infected by a sexually transmitted infection (STI), it is caught early. The earlier a STI is detected the better, because it may prevent the development of other STIs, progression of the STI detected, and, in some cases, death.

When PrEP is prescribed, physicians know that you are more susceptible to being infected with other STIs. I’m not

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going to tell you that you have syphilis because that is your doctor’s job, but I will tell you to see him or her as soon as you can.

Now I will go into some of the symptoms of syphilis and, yes, a rash is only one of the many skin symptoms. With a syphilis infection, you may experience ulcers, sores, and wartlike growths in your groin, and vaginal discharge. On your skin, you might experience ulcers, bumps, or rashes.

Your body may experience weight loss, inflammation of the rectum, rashes on your palms and/or feet, fatigue, enlargement of lymph nodes, and a sore throat. Unlike some STIs, syphilis goes through stages of infection. The first stage is characterized by sores on the genitals, rectum, or mouth, which might go unnoticed because they are painless. When the sores heal a lot of people think they are in the clear, hence why there may be more syphilis infections than others. When the sores heal, the syphilis infection, if left untreated, will go into the second stage, which is the inevitable skin rash. This is the stage that most people notice that they may need to be checked by a physician. The third stage is the most severe, and can damage many internal organs such as the eyes, nerves, brain, and the heart. So, since you are going to see your doctor next week, mention your symptoms and have your physician run a test for you.

Okay, I have to correct you and everyone who is reading this on something. We in the public health field are trying to get away from

using the term “STD” as now we are trying to use the term “STI,” because there is a difference. An STI is a broader and more encompassing description because some infections are curable and may not show any warning signs. If the infection changes a normal function of the human body, then it’s considered a disease. It is more accurate to use the term STI and it is a reminder to the general population to get tested for possible infections because many infections have no symptoms.

Just an FYI for everyone: In 2015 Florida came out with its State Health Profile. According to the Centers for Disease Control and Prevention (2015) primary and secondary (P&S) syphilis (the stages in which syphilis is most infectious) remains one of Florida’s main health issues, primarily among men who have sex with men (MSM). In Florida, the rate of primary and secondary syphilis was 6.6 per 100,000 in 2011 and 10.5 per 100,000 in 2015. Florida now ranks sixth in rates of P&S syphilis among fifty states. I have not been able to find the 2016 stats because I do not think they are out yet.

If you want to go back to using condoms that will be up to you. I cannot tell you how to protect yourself against STIs. But I will say I am a PrEP advocate and a condom advocate. Do what you feel is most comfortable for you. But do not be afraid.

Weigh the possibilities and dangers.

Empower yourself to take control of your own sexual health. ◊ A&U • SEPTEMBER 2017

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.

PAGE INTENTIONALLY BLANK

portrait n o i t a r e n e g AIDS of the

The Work in Progress of Photographers Saul Bromberger and Sandra Hoover Documents Both Positive and Negative Long-Term AIDS Survivors

by Hank Trout

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hotographers Saul Bromberger and Sandra Hoover are a team specializing in photography for a variety of editorial, commercial, corporate, and nonprofit clients that include Stanford University, McKesson, Oracle, MotherJones.com, TechWomen, and Rubicon Programs. They have worked together for more than twenty-five years. While their corporate work keeps them in business, it is in their role as artists and documentary photographers that I first met the couple last year.

In the Spring of 2016, the HIV Long-Term Survivors Group on Facebook sponsored a luncheon, “Food for Body and Soul,” in conjunction with Project Open Hand, to honor long-term HIV/AIDS survivors here in San Francisco. In addition to the performances and readings at the luncheon, Saul and Sandra displayed many photographs from their series “PRIDE: Heart of a Movement—The San Francisco Gay & Lesbian Freedom Day Parade: 19841990.” Collected in book form as PRIDE: Heart of a Movement (True North Editions), these photographs capture the exuberance and sheer joy of San Francisco’s Pride celebrations even during the worst years of the AIDS crisis. The photos reveal hints of the crisis looming over the heads of the celebrants—a sign reading “We need real trust not a quarantine to stop AIDS,” a T-shirt reading “Eternal vigilance is the price of freedom”—but mostly, they capture the community’s love of life despite being decimated by an insidious and as-yet (pre-1996) unstoppable virus.

It was at this luncheon that Saul and Sandra told me about their nascent work in progress, Portrait of the AIDS Generation, a photographic and written word project about men and women living with HIV, their families, their caregivers, and their communities—long-term survivors of HIV/AIDS who want their stories of strength and resilience told. The couple began the project in September 2015 and continue to work on it. [Disclaimer: This writer is one of the portrait subjects.]

“What a moving experience this has been as we attempt, as best we can, to tell the story of this community of long-term HIV/AIDS survivors,” the couple have written. “We feel compelled to show how supportive and important the community is here in the San Francisco

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A&U • SEPTEMBER 2017

Top (left to right): Jesús, Community Activist, 2016, digital photography, 16 by 20 inches. Jesús Heberto Guillén Solis, community activist and founder of the Honoring Our Experience Facebook group for HIV long-term survivors, is passionate about helping the community, and has been living with HIV for over thirty years; Hank Trout, 2016, digital photography, 16 by 20 inches; George, 2016, digital photography, 16 by 20 inches. George Kelly, an HIV long-term survivor, at the Harvey Milk Civil Rights Academy in San Francisco, where’s he’s been a volunteer for many years.

Bottom: Voices of the Quilt, 2017, digital photography, 16 by 20 inches. During the Voices of the Quilt performance at Martuni’s in San Francisco on July 26, 2017, Frank Marx sings with the rest of the group..

SEPTEMBER 2017 • A&U

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Ralph’s shoulder, his eyes closed, perhaps contemplating the same uncertain future that Ralph seems to be gazing into, thankfully relishing the time they have left together. It is a deeply moving, amazing portrait not only of two men who are so obviously in love, but also of strength and persistence in the face of uncertainty. The love and gratitude in this portrait are absolutely palpable; the story it tells haunts me.

Also particularly notable are the photographs of Dalene Ingraham, a straight woman living in Bonnie, Golden Gate Park, 2016, digital photography, 16 by 20 inches. Bonnie Parker at Golden Gate Park in Sacramento who was San Francisco. She has been living with HIV since 1989. “That’s what I need….calming and peaceful.” diagnosed with HIV Bay Area, and we are looking to do many David and Ralph are the most poignant, in 1991, after many more portraits.” the most moving among the series. In one years (she says) of drug use and unhealthy The subjects photographed for Portrait photo in particular, David and Ralph are indiscriminate sex. At the time of her of the AIDS Generation are as diverse as the photographed standing in their backyard. diagnosis, she was pregnant with a son, San Francisco Bay Area itself. They include David stands behind Ralph, his arms who was born HIV-free. She “cleaned up,” a handful of gay men of various ethnicencircling his husband; his hands hold temporarily, but the trauma and stigma ities, including an HIV-positive couple three eggs they have just gathered. Ralph’s of being HIV-positive drove her back to in which one man is the primary carehands cradle David’s, the fingers of their the drugs. Another child, a daughter, was giver for his husband, who suffers from left hands entwined. Ralph half-smiles later born with HIV. Dalene lost custody HAND (HIV-Associated Neurocognitive as he gazes outward—into an uncertain of her children. However, clean and sober Disorder); several straight women, some future?—while David rests his chin on since 1996, happily back in touch with her married with children who are HIV-negative; an African-American transgender woman who has become a pioneering leader in her community; artists, activists, writers, musicians, educators, poets, shop-owners—Portrait of the AIDS Generation aims to be a truly representative cross-section of the long-term HIV/AIDS survivors community.

A&U readers might recognize the couple David Spiher and Ralph Thurlow from the documentary Last Men Standing [A&U, May 2016]. For me, the portraits of Angelica with Her Mom, Patti, 2016, digital photography, 16 by 20 inches. Angelica Tome (left), who is HIV-negative, with her mother Patti Radigan, an HIV long-term survivor.

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A&U • SEPTEMBER 2017

A&U Gallery children, Dalene now divides her time bethe HIV-positive—who want to add their ect seems to focus me—I need the portrait tween running a curio shop in Sacramento portraits and their stories to the project. subjects more than they need me. These and her role as an educator and advocate The couple aim to make the series a true people mean so much to me,” Sandra told with Sacramento-based women-centered portrait of all the long-term HIV/AIDS me. Saul continued, “We’ve met some of HIV groups like Sunburst and Sisters survivors in the greater Bay Area. the most giving and compassionate people in Survival. Dalene’s portraits attest to a Although Portrait of the AIDS Generwhile working on our Portrait of the AIDS hard-driven life but also reveal her newation is a work in progress and far from Generation project, especially the people found exuberance and purpose in helping completion, some of the portraits have who have trusted us to tell their story with other HIV-positive women. already seen gallery walls. As I write this our portraits. It’s been a very moving exPortrait of the AIDS Generation is not (June 2017), several of the photographs perience, getting to know them and telling Saul’s and Sandra’s first project documentfrom this series hang as part of the “Celtheir stories.” ing lives of the HIV community. In 1995 they created another documentary series entitled “House of Angels: Living with AIDS at the Bailey Boushay House” in Seattle, Washington.

Bailey Boushay House (http://www.baileyboushay.org) was founded to address the housing and health care needs of people living with AIDS, particularly their end-of-life care needs.

In the photographs Saul and Sandra made of the patients and caregivers at Bailey Boushay, the pain and frustration is obvious, particularly in the photographs of patients lying abed with friends/relatives attending at their sides. It is a beautiful yet emotionally devastating series of blackRalph and David in Their Garden, 2016, digital photography, 16 by 20 inches. Ralph and David have been married for twelve years, and live in Hayward, California. David, at right, has been living with HIV for thirty years and eighand-white photos. teen years with AIDS, while Ralph has had AIDS for twelve years and has HIV-related dementia.

As Saul and Sandra have gotten to know the community of long-term HIV/AIDS survivors, it has ebrate Community” exhibit, the Harvey We need more such compassionate become clear to them that not all survivors Milk Photo Center’s annual Pride exhibit. storytellers in 2017. of the plague are HIV-positive—they have The couple’s ultimate goal for the series is If you are a long-term HIV/AIDS survivor in come to realize, as has the community a gallery showing—or perhaps a travelthe San Francisco Bay Area or the Sacramento itself, that all of our brothers and sisters ing gallery show—of the portraits along area, either HIV-positive or negative, and are who lived through the worst pre-HAART with brief biographical sketches of each interested in sharing your story—or just want to years of the epidemic are indeed our fellow of the survivors, and a book of portraits check out more of Saul’s and Sandra’s beautiful survivors, no matter their serostatus. After and stories. Currently they are seeking work—go to www.saul-sandraphoto.com or conall, our HIV-negative cohorts lost just as grants to finance the completion of the tact them via email at sbsh@pacbell.net. many friends and lovers and coworkers, project and hope to have the entire project and surely suffered the same unspeakable gallery-ready within a year.

Hank Trout is an Editor at Large at A&U. grief, as those of us are HIV-positive and I asked Sandra and Saul about their lived through the Plague Years. Thus, the motivation for the series, as well as what couple have begun to seek out and phothey personally have gotten out of the work tograph HIV-negative survivors—friends, they’ve done. “I’ve never met such beautichildren, siblings, coworkers, caregivers of ful and resilient souls in my life. Our projSEPTEMBER 2017 • A&U

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PrEP CHAMPIONS In a Rare Series of Candid Conversations, Three Women of Color Open Up About Their Decisions to Take PrEP, the Challenges They Faced Along the Way, and the Impact Their Stories are Having in Their Communities

by Chip Alfred Photographed Exclusively for A&U by Michael Kerner

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early a half-million women in the U.S. are eligible for PrEP, according to the CDC. So why aren’t more of them—especially Black women, who are at higher risk—taking it? And why are so few women on PrEP willing to talk about it? Major multimedia PrEP awareness campaigns have launched around the country to increase knowledge and uptake of PrEP among women of color, including #PrEP4Love Chicago (www.prep4love.com), D.C.’s #PrEPForHer (https://dctakesonhiv.com/prep/african_american_women) and #LetsTalkAboutPrEP (www.bwhi.org/prep/prep) facilitated by the Black Women’s Health Imperative. But it was a small-scale project in San Francisco that captured my attention. The “Share Your Story” blog campaign at HIVE (www.hiveonline.org/ hive-blog) features real, uncensored accounts of women sharing their PrEP journeys. Now they tell A&U why they went public with their stories and what they want other women to know.

Monet, Christina and Nikole, all San Francisco Bay Area residents, have blogged for HIVE, an organization dedicated to reproductive and sexual wellness for people affected by HIV. Caroline Watson, social justice and communications coordinator, launched the campaign with A&U • SEPTEMBER 2017

a targeted outreach to recruit new contributors. “We wanted to reach [a diverse set of ] women—[women of ] lower socioeconomic status, sex workers, women with multiple partners, and women of color.” The ask, which is posted on the blog and distributed nationwide, is simple. Prospective bloggers wanting to share their stories are welcomed.

A $50 stipend is offered for each blog published. Professional writing skills are not required, and blog posts can be anonymous. The blog includes “#Where’sMyPrEP?,” which spotlights the experiences of women with PrEP, particularly any obstacles they encountered in the process.

Monet (not pictured) is one woman who had difficulties getting information about PrEP. The twenty-nine-year-old student and single mom had her first conversation about PrEP at a local women’s clinic where she went for a routine pap smear. “The provider told me about PrEP, but she said that I didn’t need it,” Monet recalls. “I was confused. I wasn’t really monogamous, and I wasn’t sure why she thought I wasn’t at risk and didn’t give me more information.” At press time, Monet hadn’t started on PrEP yet, but after learning more about it, she is now considering it. “As a Black woman, people tell us what to do. They don’t really answer our questions or show us respect,” she comments. Now she believes PrEP “is an awesome discovery that doctors should be aggressively presenting to their patients. No one wants to contract HIV, and if there is a way to prevent it, people should have that option.”

When Christina Palacios was first offered the option to start on PrEP, she was hesitant. “I thought maybe it was a little too good to be true,” she discloses. “I didn’t think it was for me.” Since then the thirtyfive-year-old student and former sex SEPTEMBER 2017 • A&U

worker came to realize PrEP is a viable option for her. A PrEP user since 2016, Christina now educates her peers about it. “I talk to people at school, at the bus stop, the grocery store, parties, and anywhere else people will listen.” After a routine traffic stop landed her in jail for a ten-day stint, Christina saw it as an opportunity. “What is there an abundance of in jail? People of course, and where there are lots of people, there are many opportunities to educate people about harm reduction and of course PrEP!” Women aren’t always receptive to the conversation at first, she tells us, but they tend to listen when it’s someone who looks like them sharing her own story.

“A lot of women are upset that they never heard of PrEP before. They also need to be reassured that PrEP is not a vaccine, and that they will not get HIV from taking the pill.”

As a woman of color, Christina feels like a lot of decisions are made for her.

“PrEP makes me feel empowered, like I’m in control of my sexual health. Being the open book that I am, I get to use my voice to help change lives and give other women power. I’m passing the torch.”

Nikole Trainor, thirty-four, worked as the multi-site coordinator on the U.S. PrEP Demonstration Project. She has been on PrEP since last year. “Women need to know that PrEP is also for them,” she says, pointing out that most social marketing ads and PrEP awareness campaigns have focused on men who have sex with men. “Reaching women of color requires innovative creative thinking with images and messages that women of color can resonate with. That includes more than just big flashy ads on billboards and bus stops.” Nikole would like to see PrEP awareness messages woven into women’s daily routines in places where they typically go. continued on page 62

Nikole Trainor

Caroline Watson

Christina Palacios

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Uncon d i Love tional

T

here’s no way around it: we’re not in Mayberry anymore. We lead fragmented, often isolated lives. So we look to our pets for the companionship and sense of connection that neighbors and others used to provide.

This is doubly true for people with chronic illnesses such as HIV/AIDS. Despite all the research that has been done, there’s still a stigma attached to the disease in some quarters. “Animal love is so special because it’s so non-judgmental,” observes Kaushik Roy, executive director of Pets Are Wonderful Support (PAWS) in San Francisco. “And for some of the people who have lost a lot of their friends, their networks, their chosen families, they’re facing deep isolation.”

PAWS came into being as a result of the HIV/AIDS epidemic in San Francisco. Back in 1986, volunteers at the city’s AIDS Foundation Food Bank quickly noticed that their clients were turning around and feeding the donated food to their pets. So, the volunteers reasoned, there was a need for a different kind of food bank—one that would offer these devoted cat and dog owners a way to obtain pet food and supplies without skimping on the necessities of life for themselves.

The result was PAWS, which emerged in October of 1987 as an independent nonprofit organization. It was, Roy explains, probably one of the first nonprofit groups in the world that was designed to specifically “keep companion animals together with their owners, who might

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Pets Are Wonderf ul Suppo & Their rt (PAWS People ) Help

be sick, disabled, or home-bound.” It was certainly the first organization of its type in the U.S. and “a catalyst for many other organizations.”

Much later, in 2015, PAWS became part of The Shanti Project. “We were really excited to have PAWS join forces with us,” Roy recalls, “because it was the best way to keep PAWS going strong. It was also a good mission fit.”

PAWS provides services for individuals beyond those living with HIV, such as individuals living with other disabling illnesses and seniors.

Strangely enough, “[t]he roles that companion animals play in supporting people living with HIV have been historically overlooked,” according to a 2015 article by Allison Kabel, Nidhi Khosla, and Michelle Teti. The studies they looked at showed “that pets provide PLH/A [People Living with HIV/AIDS] with an avenue for love, support, physical activity, and perhaps even social interactions with others, all of which are beneficial to the owners.” In their own study, which involved HIV-positive women from two cities in the Midwest, Kabel, Khosla, and Teti discovered that the subjects’ pets were often regarded as spiritual guardians “looking out for or watching over someone from beyond the tangible realm.” They were also seen as an “unconditional source of support,” giving “devotion and absolute loyalty that is not subject to the influences, prejudices, or stigma of the outside community.” Last, but not least, companion animals provided these

s Anima

ls

by T.J. Ban ks Photos by K endra Luck

women with “a sense of purpose and feeling [of being] meaningful or significant.”

Roy seconds these observations, remarking that “animals are often the biggest source of support and compassion. Our pets are part of our families. For PAWS clients, they’re often their only family—often the only reason they have to get out of bed.”

Isolation is, he adds, “a considerable factor in terms of health. One of the things we’re delving into more is the long-term survivor community, which has some special challenges.” And one of those challenges is the “accelerated aging process from being on the meds. So a lot of the people who have been on the meds twenty-plus years might be in their fifties but have a seventy-year-old body.” Many of them are also on fixed incomes, a fact that puts them at higher risk for eviction.

All of these factors make their pet companions doubly precious. So, over time, PAWS has expanded its services. The two major services are, of course, free pet food and vouchers for veterinary care. But now there’s a critical illness fund for more serious issues, such as cancer and surgery. Another program, “Ask the Vet,” allows clients to do just that regarding routine health issues so that they “can save money. A lot of volunteer vets are A&U • SEPTEMBER 2017

a pet, there’s obviously a grieving process,” conRoy muses. “We try to be there for tributing them. But when they’re ready to look for Left to right: their services.” a new pet, they can get re-enrolled.”

Client Juan Pablo The organization also But all too frequently, it’s the human G with his dog provides free cat litter, “cat who is “terminal, and we bring the cat in Malena; client stuff,” and dog washes as to say good-bye. And if the human doesn’t Phoenix B with well as free prescriptions have arrangements or anyone to give their dog Chester; and flea medications when pet to, we make arrangements so that the client Steven M possible. And there are human can pass away knowing that that’s (right) with his more than 500 volunteers been taken care of.” partner Michael in the San Francisco area In the end, we’re talking about an and their dogs who do emergency foster emotional lifeline. Yes, there are health Hope (the Boxer) precautions that must be taken but not care and dog-walking.

Some of the clients have and Gizmo (the as many as you might think. And they’re been coming in for so long, dachshund); pretty obvious ones. Steve Weinstein, a there is a real bond between and client Beth journalist who has been covering the AIDS them and the volunteers. So S with pet Precrisis since the early 1980s, goes through the latter go out of their way cious some of these. Stick to cats and dogs and to help. Case in point: One forgo “reptiles or exotic animals such as client was on the East Coast ferrets.” Make sure those cats and dogs are when it became necessary to put his dog healthy. (“There are already plenty of people down before he could fly back home. PAWS willing to take on the responsibility of helping arranged for the client to have face time on a sick animal.”) Don’t let your pet lick your the computer so that he could say good-bye to face or any cuts you may have. Make sure that his old friend. somebody else changes your cat’s litterbox.

The organization also makes a point The benefits outweigh the possible risks, of supporting clients in the days following however. Having a pet is “grounding,” Weintheir bereavement. “When somebody loses stein maintains, adding, “If you’re laid up in the SEPTEMBER 2017 • A&U

hospital, knowing that there’s a pet waiting at home to be taken care of—and to take care of you—provides as much a spur to getting well as a bookshelf of self-help guides.”

A vet friend of mine worked with the A.I.D. a Pet program—a smaller version of PAWS— at The Living Center in Hartford, Connecticut back in the 1990s. “It’s obvious that there’s no shortage of love on the part of the owner for these dogs and cats,” he told me in an interview we did back then. “In a lot of cases, the cat or dog keeps the person going. You know, put yourself in the place of someone who’s been diagnosed with this illness, and you’ve got to be depressed. And they’ve proven that having a cat or dog goes a long way toward combating the depression that goes with being diagnosed with HIV. They [the animals] love you unconditionally.”

Non-judgmental…unconditional…unconditionally…. These words keep coming up in the dialogue about people with HIV/AIDS and their animal companions. And that’s why there are now so many variations on PAWS nationwide.

Some provide low-cost spay/neuter surgery and veterinary care, while others offer pet-food banks and other services. But they all have one common goal: keeping that lifeline going.

For more information, log on to: www.shanti. org/pages/paws_about_us.html.

T.J. Banks interviewed Carol Marsh for this issue.

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A&U • AUGUST 2017

Beauty

A lly before photo by Noemi Torres; after photo by Jay Jablonski

W

hen Eric Leonardos casually asks me where I go to get my haircut, I freeze.

I’m sitting in his mid-century inspired living room in West Hollywood, expecting him to throw shade when I confess. Supercuts. Every month. I prepare to explain that haircuts are a transactional thing with me, and I don’t like to make appointments and curly hair is pretty goofproof, isn’t it?

I assume saying this to a hair and make up artist, one who retains some celebrity clients as well, would be sacrilege. But Leonardos simply smiles and reassures me that my approach to hair is fine for me. Still, I’m missing out, he adds.

“Some people want to come back to the same stylist not only for their skill but for their experience and the connection with that person,” Leonardos says. “I get SEPTEMBER 2017 • A&U

Hair stylist and makeup artist Eric Leonardos uses his reality-show celebrity to give back

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

to know them and they get to know me and we share things about our lives.”

Leonardos wasn’t asking me about my hair habits to shame me. He was making a larger point about human connection and how the quest for beauty should be more than running away from ugliness, which ties into his initiative, Beauty Allies.

But before I get to Beauty Allies, it’s important to understand how Leonardos gained a national platform to talk about these things. It all started with that prototypical “meet a stranger, get a gig on a reality show, come out as HIV-positive to the world” Hollywood fairytale.

With other volunteers, Sera Chung received a makeover from Eric Leonardos and the team as a thank-you for their selfless work at Project Angel Food.

Prince Charming, found and lost In early 2016 the casting people behind the LOGO TV series Finding Prince Charming reached out to Leonardos via Facebook. One of the casting editors had met him at a party a month earlier.

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“Just before I was contacted by the show I had just made a decision to focus more on helping people in the HIV community,” Leonardos says. And, thanks to Shonda Rhimes, who wrote the best-selling book, Year of Yes, he designated 2016 as his year of saying yes.

It wasn’t until a subsequent Skype interview with the casting director that Leonardos figured that being on the show, if he were cast, could be a springboard to doing more regarding HIV. But he would have to make it through the interview process, and, ironically, disclosing his HIV-positive status could kill his chances to be on the show.

“HIV is an important issue in dating,” Leonardos tells me. “If I’m going to be intimate I’m going to talk about it with someone I’m dating. I decided if I go on this show I would be honest about it.”

As it turned out HIV wasn’t an issue to the producers, and in June Leonardos was boarding a black SUV and driving to an undisclosed location to be sequestered in a house with thirteen other guys vying for the affection of an Atlanta-based interior designer, Robert Sepulveda, Jr., a man of chiseled cheekbones and salt-and-pepper scruff who claimed to be looking for his own “white picket fence dream.”

If you’re not familiar with Finding Prince Charming, think of it as the gay male answer to The Bachelor and The Bachelorette. There are some differences between the shows, in addition to sexual orientation. At the end of each forty-five-minute episode of Finding Prince Charming, instead of a “rose ceremony,” there was a black-tie event. This involved Sepulveda asking a finalist to remove his tie—he always gave a reason—before gently and diplomatically ejecting him from the show.

In an emotional scene in the last of nine episodes Sepulveda told Leonardos he would keep his tie, saying, “I think that our lives crossed for a reason.”

That was several episodes after Leonardos came out to him—and the viewing audience and the world—as HIV-positive.

This was episode five, at a masquerade party where contestants were asked to take off their self-made masks and reveal a secret.

Eric was last to remove his mask and he took a deep breath before confessing.

“Ten years ago I found out that I was HIV-positive,” he told Sepulveda. “I’ve learned to love who I am today. I share this with you because I have to. It’s a part of me.

It’s a small part of me‚ it’s only a part of me—there’s much more to me than that.”

“Hey, there’s nothing you could say that would scare me away from you,” Sepulveda said, before running his hand through Eric’s hair and kissing him. Leonardos affirms to me that such moments are completely unscripted.

“I knew the weight of what I was going to do,” Leonardos recalls. “I didn’t know that I would do it then, not until that day.

The production staff did say I would know when the right time to talk about [HIV] would be. It had to be the right time. It’s much like real life in that way.”

Leonardos adds that throughout the episodes—the stilted mixers, the group dates, the “tell me about yourself in a hashtag” game—he tried to present himself as he really was. Which was not easy, given the unreality of the reality show format.

“I went on the show to be myself and talk about HIV, even though I didn’t know how I was going to talk about it if I had the opportunity to represent myself and community and anyone living with HIV in the best way I could.”

Leonardos estimates that over the course of the show he saw Sepulveda in total maybe twenty hours (real time not air time), including four dates with him— two alone and several group dates—just enough time to decide you would like to keep getting to know someone.

As the “winner,” Leonardos joined Sepulveda and walked off into the sunset to see if things would work out in real life. Ultimately they didn’t work and Leonardos doesn’t go into specifics of why, just that the connection he thought they shared just wasn’t there when the cameras were off. “We’re still friends,” Leonardos tells me, adding that the surreal way they were introduced may have hindered, rather than encouraged, a stronger bond.

“The idea was, whoever he had the strongest connection with, he would choose, but it’s hard to believe two people could get married out of that situation.”

“You can be a beauty ally in many ways.”

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A&U • AUGUST 2017

A new platform Though neither man found that white picket fence, at least not with each other, Leonardos, at the end of the show, has something even more valuable.

“If I hadn’t made it to the top three in the runoff, the show might have been just a blip in my life.

Now I will forever be the winner of an all-gay dating show,” he says. “I can’t erase it even if I wanted to.

So I can either run with it or hide from it.”

Running and hiding was not an option, he admits, and he was still in his year of saying yes. With three million viewers who had followed him for nine weeks, plus stories in US Weekly and Access Hollywood, as well as many Instagram followers, he had a platform, and a chance to use his fame to help others.

“When I was younger I watched celebrities on TV and I thought if I were them I would use that fame for good.”

At his home, the thirty-six-year-old Leonardos shows me his vision board, and he’s so excited about his many projects that I have a hard time following everything. So I ask him about Beauty Allies, something that he’s been thinking about for years.

He explains that beauty should be an “inside job.” I’m intrigued. He continues.

“Our society is obsessed with outer beauty, but I believe there must be balance in beauty.” To clarify, he reads to me from his notebook (he says he writes in his notebook daily): “What makes something beautiful is not about fitting into a perfect mold. A majority of our society has decided on what’s beautiful for the human being and people are trying to fit into that mold. When there is an imbalance, when the thought is negative, then the ritual of putting on make up is about saying ‘I’m not good enough.’ If people have that thought then that will create an unhappy, dissatisfied person.

“We can approach beauty from a more balanced place and see a lot less of these people obsessed with perfection on the outside and call on them to focus on beauty on the inside,” he concludes, beaming.

I’m still self-conscious about my Supercuts revelation, and I’m not exactly clear how his vision relates to philanthropy.

He explains by offering the mission statement of Beauty Allies: It’s a national network of beauty professionals that will highlight noble causes and “promote balance to an outer-beauty obsessed society.”

I’m still looking for the bottom line, so Leonardos shares what he’s already accomplished vis-à-vis Beauty Allies.

Beauty, inside out In February, Leonardos and his salon at the time, Public Service Salon, launched an Alliance Beauty Day, a makeover campaign in conjunction with the Alliance for Housing and Healing (AHH), a Los Angeles-based group that provides the basic necessities to those struggling with HIV/AIDS and poverty. Twelve formerly homeless clients—eleven women and one man—got the full salon treatment from Leonardos and other stylists at the salon. An ally, M•A•C Cosmetics, provided cosmetics and a

45

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A&U • AUGUST 2017

makeup consultant.

Leonardos said it was about giving a new sense of self-worth.

“Some were getting back into the workforce. Some experienced a lot of trauma.

They shared their stories with me and I listened. What I got back was the experience of watching these women see their outsides begin to match their beautiful insides.”

A&U highlighted the event in an online feature in March. Desiree Whitney had nothing but praise for Leonardos and his crew as well as AHH and its development director Jack Lorenz.

“After three and a half years of being homeless, literally living on the streets of Hollywood, I was depressed, exhausted, disillusioned and hopeless. I am fifty-seven but felt eighty.…I look better than I have in many years, but what they did for my soul was truly a miracle. I feel forty, excited about my new life and BEAUTIFUL inside and out.”

It’s the inside-and-out beauty that Leonardos was promoting, he tells me. “[The AHH makeover day] was aligned with the mission of Beauty Allies because we were promoting beauty in a balanced way. We did not bring in [the clients] to point out things wrong with them. The goal was to make them feel great.”

The AHH event inspired him to do more. In May Leonardos organized another free salon day, this time giving makeovers—bringing out the inner beauty, not fixing problems, he insists—to longtime volunteers of Project Angel Food, an L.A.based nonprofit that has brought meals to people with HIV/AIDS since 1989.

“I told [Project Angel Food] let’s reward some of your best volunteers and showcase and expose with the resources we have,” he says.

He also uses social media to get peoples’ attention and drive them to the Beauty Allies website.

“You can be a beauty ally in many ways. You can give to the organization, so we can do more work like this. We may donate cosmetics, so if you have unopened cosmetics unexpired, maybe we will use it.” He’s active on Twitter, promoting his beauty days and reminding people of National HIV Testing Day, as well as promoting speeches he’s given for HIV/AIDS Services in North Texas and for the HIV/ AIDS group Thrive Tribe.

Beauty Allies is in the early stages of getting a 501(c)3 designation, but Leonardos is being an ally outside the fledgling organization. When we last spoke, he was organizing a Trans Lounge, under the auspices of the Los Angeles LGBTQ Center, to help trans women in the early stages of their SEPTEMBER 2017 • A&U

transition deal with new ways of doing hair and makeup. And he’s getting settled in his new salon, the U.S. flagship store of Paris-based franchise Mod’s Hair,.

And he’s continuing to balance his salon and charity work with freelancing for celebrities. He’s not a union stylist, he emphasizes.

That means he can’t work on the set. But if an actor leaves the set to do some press for a TV show, the network will contract with him, and SAG/AFTRA sets the rate and the duties, protecting him from saying “yes” to an unreasonable actor’s demands. Although the actors he works with, including Betsy Brandt of Breaking Bad and Life in Pieces, are very reasonable and respectful of his time.

“Unions protect us. People may not value our time the way we do.

Sometimes we will go above and beyond

feels a duty to speak out about the issues faced by people living with HIV. “For one thing, I think we can agree that people with HIV should not be homeless,” he tells me. “We can agree that people with HIV shouldn’t be rejected.”

His advocacy has resonated with others.

Says Joel Goldman [A&U, June 2016], managing director of The Elizabeth Taylor AIDS Foundation (ETAF): “When Eric disclosed his HIV status on Finding Prince Charming I saw a giant chunk of stigma chipped away.

Then when he was chosen as the winner, the stigma that surrounds people living with HIV was chipped away even more. As soon

At Alliance Beauty Day, Eric helped transform Desiree Whitney. because of our passion for what we do. Over time that’s exhausting. You want regulations to protect you.”

On being out about HIV Having this much attention as an out and proud man with HIV was unlikely just two years ago, and nearly inconceivable back in 2006, when Leonardos was living in Austin, Texas and learned his status. Initially he didn’t want to tell anyone and didn’t want to date out of fear of rejection. It wasn’t until a friend from Los Angeles encouraged him to visit, saying that people were more hip to what the virus was and what it wasn’t. Leonardos says that assessment is generally true, although he still experiences some micro-rejections and the icky but well-intentioned sympathetic responses. But none of those responses are reason to clam up about his status. In fact, he

as that moment happened, I knew that he would be a great member of our ETAF Ambassador team. He joined ETAF at AIDSWatch in D.C. and I was impressed with his commitment to be a champion for many HIV/AIDS organizations.”

Well into year two of his year of saying yes, Leonardos says he’s still looking for ways of giving back to the community, and he’s open to ideas.

For more information about Beauty Allies, log on to: www.ericleonardos.com.

Sean Black photographed Dustin Lance Black for the August cover story. Follow him on Twitter and Instagram @seanblackphoto.

Larry Buhl is a radio news reporter, screenwriter, and novelist living in Los Angeles. He interviewed advocate Chandi Moore for the June cover story.

Follow him on Twitter @LarryBuhl.

47

When We

Mobilize T

he march from the White House to the Capitol was already underway on that Sunday, October 11. I was working in the press area in front of the main stage, where I’d been handing out press credentials and answering reporters’ logistical questions for hours.

One of the reporters was a man about my age working for United Press International’s radio unit, the second biggest wire service in the U.S. He was carrying a Marantz cassette recorder, just like the one I had used at my radio job in Salt Lake City, Utah. I walked up to him thinking I’d talk shop about his gear and noticed the white cassette in the dock, on it scrawled in bright red magic marker was just one word, “FAGS.” I was stunned then furious. I walked up to him and grabbed the March press credential around his neck and with barely controlled fury said, “Give me your damn press pass now!” With a smirk on his face, he said, “Why?” I said, “You know damn well why, give it to me!” He handed me the credential and I walked him to the press gate and told the other volunteers not to let him back in.

I hoped he would be in deep shit for not getting to record the Reverend Jesse Jackson [A&U, November 2000] and others yet to come on stage.

The reporter’s homophobia was hardly surprising, President Reagan had only said the word “AIDS” in public for the first time in May of that year. Nearly 21,000 Americans had already died after years of neglect and deliberate efforts to slow AIDS research and education by Reagan and conservatives like Senator Jesse Helms. Now we’d brought the graveyard to their front door.

Saturday at dawn volunteers dressed in white ritualistically and reverently laid out 1,920 three-by-six foot quilt panels—each the size of a grave—with the name of a person who had died of AIDS. Two blocks of the massive Washington Mall became a cemetery of hope.

Cleve Jones [A&U, January 2017] dedicated the Quilt with these words; “We bring

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Thirty Years Ago, the March on Washington for Lesbian and Gay Rights Helped Push the AIDS Crisis to the Foreground of Public Consciousness

by Mel Baker Photos by Ellen B. Neipris

a quilt. We bring it here today with shocked sorrow at its vastness and the speed with which its acreage redoubles. We bring it to this place at this time accompanied by our deepest hope: that the leaders of our country will see the evidence of our labor and our love and that they will be moved.”

As someone who suspected I already had the virus I wondered what my panel would look like.

The 1987 March on Washington for Lesbian and Gay Rights was not the first time the LGBT community had marched in D.C. The very first protest was a small group of Mattachine Society and Daughter’s of Bilitus members, who carried placards in front of the White House on April 17, 1965, more than four years before Stonewall.

A few weeks before our march, I was working in our little media office when a man in his sixties came in. He introduced himself as Jim Kepner. I recognized the name and said, “You were in the Mattachine Society!” He seemed pleased that I knew who

he was and took a pin out of his pocket and gave it to me; it was from the 1979 March on Washington. He touseled my hair and said how happy he was that young folk were carrying on the work.

The ’79 March on Washington brought around 80,000 people to the Ellipse just south of the White House. Eight years later a community galvanized by the AIDS crisis and the rising power of the fundamentalist right would bring an even broader swath of people from around the U.S. and the world.

It had been an exhilarating morning, up at dawn getting our press kits together in our offices just two floors above the George Bush for President campaign. Hundreds of marchers had been coming in to the offices to ask questions or just see what was happening. A favorite pastime had been to “accidentally” stop on the Bush floor and try to put a little “fear of the queers” into the Republican space. In fact some of the Bush office staff were helpful, including a young, I suspected closeted gay man in a suit who allowed us use the Xerox machine when ours went on the fritz.

As the march kicked-off from the White House on Sunday morning I was riding in a flatbed truck in front of the march main banner with the camera crews and photographers working to catch the march in motion.

Whoopi Goldberg [A&U, June 2000] was in the “People with AIDS” contingent just behind the first banner, pushing one of her friends with AIDS. She would later hold an impromptu press conference in which she said, “I’ve lost sixty of my friends to AIDS. I’m here for me, my friends, my daughter and all of those who are suffering.’’

There were so many people it took hours for the march to make its way from the White House Ellipse to the Capitol. Several hours into the march, organizers simply told those waiting on the White House ellipse to forego the route around the White House and walk straight down the Mall and around the AIDS Memorial Quilt to the rally stage.

The U.S. Park Police had told us before A&U • SEPTEMBER 2017

the march that the mall could hold around 250,000 people per block. We filled three blocks all the way back to the AIDS Quilt.

The Park Service’s official number would be given as 200,000 taken from earlier in the day. It was clear that the number was at least three times higher.

As people moved past the AIDS Memorial Quilt, the Reverend Jesse Jackson took the stage and used the metaphor of a quilt to define his vision of America. He believed the United States is not so much a melting pot, eliminating all differences, as it is a patchwork quilt of many groups; African-Americans, labor, feminists the poor and others. He urged us to join his campaign and warned the Lesbian and Gay community that, “your quilt is too small.” The message was that we needed to join with other groups to win political power. A philosophy shared by slain San Francisco Supervisor Harvey Milk a decade earlier, when he won office with the help of labor, minorities, and seniors.

Jackson’s speech came late in the day, but brought with it significant press coverage. He had just declared his bid for the Democratic Presidential nomination the day before and when he entered our stage he carried a huge contingent of reporters with him from his campaign bus.

Jackson had been here in Washington with the Reverend Martin Luther King, Jr., on the other end of the Mall in front of the Lincoln Memorial during the historic 1963

SEPTEMBER 2017 • A&U

Civil Rights March on Washington. Now he spoke of the need for civil rights protections for gays and lesbians and more funding for AIDS. While the political power demonstrated by the march and the call for compassion created by the AIDS Memorial Quilt were powerful, we as a community were crippled by the Supreme Court’s Bowers v. Hardwick decision handed down a year earlier. The ruling upholding sodomy laws gave our enemies a perfect weapon to deny AIDS education and research funding at all levels.

It was easy to argue that we didn’t deserve compassion or help, when we were felons in many states because of the way we loved.

The rage against that decision boiled over on the steps of the Supreme Court itself on Monday morning. More than 600 people were arrested during the course of the day, denouncing the high court’s ruling upholding sodomy laws. Michael Hardwick and another man had been arrested in his Georgia bedroom while having sex, after police were allowed to enter the apartment by a roommate. The “Out and Outraged” protest at the Supreme Court was the largest civil disobedience demonstration in the nation’s capitol since the Vietnam War. At the time of the march many wondered if it would actually make any difference. The mobilization of October 1987 did in fact empower the LGBT and HIV communities.

ACT UP surged to even greater direct actions. The AIDS Memorial Quilt would return a year later, this time on the vast oval ellipse behind the White House with 8,288 panels. LGBT lobbying and political organizations also grew in size and influence.

The vile Hardwick decision was reversed in 2003 when a case involving Texas police arresting a gay man for consensual sex in his own home was this time, gratefully found unconstitutional in Lawrence v. Texas, rapidly unraveling sodomy laws across the U.S. Whether it was the first protest in 1965 or later LGBT marches on Washington in 1993 or 2000, what we’ve learned applies to the work of activists today, whether it’s for HIV treatment, education and decriminalization, the Black Lives Matter movement, a woman’s right to choose, or the ongoing efforts to expand the protections and rights of LGBT folks.

Feet on the street matter. Mobilizing people to march builds community and is a show of force both to the media and to politicians.

Finding a way to generate a compassionate response from the public is vital. There was no more powerful tool than the direct, emotional impact of the AIDS Memorial Quilt.

Righteous anger is a powerful weapon, when harnessed in a nonviolent way. The civil disobedience at the Supreme Court and the numerous ACT UP direct actions showed that injustice should be met with rage and a demand for change.

The 1987 march changed my life. I stayed in D.C. and worked in the anti-nuclear movement and later for National Public Radio.

October 1987 inspired me to fight HIV with as much courage as those men being pushed in wheel chairs during the march. Nine years later after taking part in four clinical trials, buyer’s club herbs, supplements, and other therapies, I would start taking the protease inhibitor cocktail that saved my life.

Perhaps someday I’ll give one of my remaining march badges to a young activist and tell them how proud I am that they are continuing to carry on the work that so many embraced with the 1987 march theme, “For Love and for Life We’re Not Going Back!”

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.

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The Power of the Positive Activist Josh Robbins Taps Into Social Media to Educate About HIV

by John Francis Leonard Photographed Exclusively for A&U by Josh Robbins

W

e speak to many wonderful HIV/AIDS activists and advocates at A&U—bringing their stories to our readers while promoting their cause. Recently, I’ve taken an interest in speaking with a new, younger generation of advocates and the experience has been both rewarding and eye-opening. These young people are not only effective at reaching those of their generation with a sex-positive message, they reach us all, be it those who are still negative with messages of prevention, the newly diagnosed, or the long-term survivors like myself. They have a firm grasp of today’s landscape of prevention and treatment, with all that is available to us now, and a clear understanding of where we’ve come from as a community.

They are cognizant of the battles fought for the treatment we have today and well aware of the losses suffered early on in the plague. Recently, I had the opportunity to speak with one of these modern-day HIV/ AIDS warriors, Josh Robbins. He is using and developing all of today’s tools like social media and video to get his message out to the masses. Whether reading his GLAAD-nominated blog, watching his videos on YouTube, browsing his website, or speaking to him about the work he loves, one message and one thing about Josh is clear: a positive attitude and message can change the game entirely.

Part of this attitude he conveys may simply be a regional charm.

Josh is a Southern boy, having grown up in Tennessee between Memphis and Nashville in a conservative town that he describes as having a church on every corner. Like many of us today, he comes from a large, blended family, his parents having divorced and remarried in his early teens. But it’s a close family. He has a sister and two younger brothers from his father’s second marriage.

This support system served him

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well as a young man. According to Josh, as an adult, “I was a poster child for HIV prevention.” He was taking part in an HIV vaccination study when he tested negative in November of 2011. He tested positive for HIV in January of 2012. Josh says that he knows exactly when he became infected and by whom. “Some people do want to know and some people who do know, don’t,” says Josh. He was having sex with another man and, at some point, the condom came off. It was a mere ten minutes of unprotected sex because they were interrupted by a friend knocking at Josh’s door.

It highlights an important point because neither man orgasmed: HIV can be, and often is, transmitted through pre-ejaculate.

It was a hard lesson to learn. There’s a fascinating video on Josh’s YouTube page in which he filmed himself traveling to

and from the clinic to receive his results.

After getting the news, he flew straight home to tell his parents. Josh told me that when he broke the news to his father, the only thing he said was, “Keep living, son.”

That message resonated and informs his outlook on his status today.

I asked Josh a question that I ask of every HIV/AIDS advocate I interview: “When people ask you what you do, how do you describe it?” Josh has a full-time paying job. He owns a small health marketing consulting agency. As Josh puts it himself, “By night I’m a social media HIV activist that is really just trying to encourage people who are living with HIV to keep living and living well…” How he achieves this is through a self-professed love of tech as a tool to reach his audience. One of his main tools is video, making use of the fact that he is a natural on camera, funny at times, always informed, and making use of his positive outlook and attitude. His videos on YouTube, especially his slickly produced and compelling series “HIV MINUTE,” have reached a combined viewing of 1.5 million minutes altogether. His popular blog as well as another webpage and two Twitter accounts also help keep people informed. He’s on Facebook and most other social media outlets with a combined 60,000 followers. “When you’re scrolling through your social media feed, I wanted there to be content about HIV that wasn’t boring or scary,” is how Josh describes it. But it doesn’t stop there. Josh developed the sticker pack. Those are little “stickers” that a user can attach to the top of a text conveying an image or message. He released a sticker pack on World AIDS Day last year on iMessage.

There are two HIV-related apps that Josh has developed. The first, ASK HIV, was the first peer-based HIV hotline available on iPhone.

The other is DISCLOSURE+ A&U • SEPTEMBER 2017

and is the only way for HIV-positive individuals to help prove disclosure if falsely accused of criminal nondisclosure. He’s also published two ebooks and managed to get content published by both Apple News and Google News. As Josh puts it, “My curiosity as a techie or a social media nerd is the beginning of where the activism stuff comes from. I want to be the first.”

In addition, Josh is building a career as a speaker. He talks about HIV-related issues and in addition has shown skill as a motivational speaker as evidenced in some of his videos. Josh is also currently involved as a spokesperson for Napo Pharmaceutical’s #MyHIVThankYou campaign. What Josh does with these many tools is convey information about how HIV is transmitted and how to live your best life with the virus when you’ve acquired it. It’s information that has great value for both the newly diagnosed and the long-term survivor. His messages about prevention and the many myths about transmission reach a growing audience of the HIV-negative as well.

Speaking with Josh, I soon realize that he is someone with definite opinions about HIV prevention and wellness. He doesn’t always follow the pack, however.

I don’t always agree with him on every issue, but I was surprised by how much I learned and he changed my outlook more than once. When it comes to his strong viewpoints, however, Josh puts his money where his mouth is. He has a deep understanding of the issues he promotes. “I am constantly searching out information,” says Josh. “I’m on every list and database [dealing with HIV] that you can imagine,” he continues. He reads and disseminates the latest studies and reads medical journals in this quest for knowledge and knows what experts to go to with any questions he has or clarification he needs. He wants answers to his questions and says, “I’m not tied to any advertisers and I can ask honest questions about what is really important.” Take the notorious Martin Shkreli, nicknamed “Pharma Bro” by a disapproving public. Shkreli, an investment fund manager, bought the rights to the antiparasitic drug Daraprim and raised the cost astronomically. He was publicly vilified in social media and the press. Josh actually felt concern for him and was compelled to see if there was more to the story. He approached him on Twitter and requested an interview for his blog after introducing himself as an HIV advocate and Shkreli agreed. What Josh found out surprised him. Only 2,000 people in the U.S. take the drug with sixty percent getting it for free or for a penny. “No patient paid more than a $20 copay,” recalls Josh, “There were SEPTEMBER 2017 • A&U

absolutely no patient access issues.” That quickly brought Josh to another point. “I believe that healthcare deserves to make money.

If you have a brain tumor, do you want the smartest, most talented person in the world working on that medicine?” He asks. Many people believe that healthcare shouldn’t be monetized, but Josh is not one of them. Says Josh, “I think that it should make money. If the smartest, most talented people don’t make money, they’ll go into another line of work.”

Josh then surprises me with a question: “How do we know that condoms are effective? We don’t know.” He goes on to inform me that the condom is a device approved by the FDA for HIV and pregnancy prevention in penile-vaginal sex only. “I don’t have a vagina,” he laughs. Why have there been no studies for anal sex? He says it’s hardly surprising that there are still such high rates of transmission between men having sex with men. It’s worth remembering that Josh’s own infection was due to condom failure.

It’s gotten him in some trouble with HIV prevention groups who feel that he is against their use somehow. He’s not. He is in favor of further studies, however, and much in favor of the use of PrEP as a means to thwart transmission. It also leads him to another concept that we as HIV-positive individuals are promoting and that is that Undetectable=Untransmittable. “It’s the ethical thing,” he exclaims, “it’s the truth.”

I close with another question I ask of all the advocates and activists I’ve interviewed recently. With all the cutbacks to HIV/AIDS research and support services proposed by this administration and the threat to the healthcare of so many HIV positive individuals, what are the subject’s biggest worries and concerns? Josh answers with much eloquence and his usual positive outlook. “ACT UP provided a great example of depending on each other while also putting great pressure on the government to do something. There has never been a greater time, in my lifetime, for all of us to love each other like family and do whatever we must do to keep each other healthy. Politics are politics, but love and support will beat them everyday.” I hung up the phone after my interview with this remarkable young man feeling invigorated, challenged, and with a greater sense of hope than I had before we spoke.

Check out Josh Robbins’ blog at: www.imstilljosh.com. Visit his website: www.JOSHrobbins. com. YouTube: YouTube.com/imstilljosh. Follow him on Facebook and Twitter @imstilljosh.

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

51

Coming Out

Chrysalis of the

Author & activist Paul Thorn talks about his new book, The Broken Heart Toolkit, and finding a better sense of self

I

f someone you love hurts you, cry a river, build a bridge, and get over it,” an anonymous but wise person once said.

Yet, finding the strength to build that bridge is no easy task. It requires time to heal and courage to find hope yet again.

Sometimes, hope might seem lost. And yet, we can find it in the form of a new book by Paul Thorn, The Broken Heart Toolkit, an easy-to-follow survival guide that outlines how to build that bridge “from heart-hurt to heart-healthy.”

Many might be familiar with Paul Thorn’s book, HIV Happy. Living with HIV since the age of seventeen, Thorn has also lived through the darkest decades of the epidemic. In the process, he has become an HIV activist, using writing as his tool to fight AIDS. Recognized

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worldwide for his work, Thorn also played an important role in overturning the travel ban preventing HIV-positive people from entering the United States, back in 2009. A few years later, in 2014, he was a finalist for the Stonewall’s Journalist of the Year.

In HIV Happy, as well as in The Broken Heart Toolkit, Thorn writes about “finding a better sense of self.” In HIV Happy he explains the steps to finding or rediscovering that sense of self in the face of loss of health, “in the face of illness,” and in his latest book, in the face of loss of love and being left broken-hearted.

Both books, HIV Happy and The Broken Heart Toolkit deal with change and the often long and difficult journey we sometimes have to take through that

change. To better emphasize the message, Thorn uses the chrysalis metaphor in The Broken Heart Toolkit, but in an unexpected way, yet one that makes perfect sense.

“It’s not anything to do with any eventual rebirth, turning into something beautiful,” he writes. “The lesson we can take however from the chrysalis idea is that change takes time.”

While he wrote HIV Happy with a specific readership in mind, Thorn wrote The Broken Heart Toolkit for a larger audience. What makes The Broken Heart Toolkit unique in a sea of self-help books about mending one’s (broken) heart is that it offers a practical, step-by-step guide that readers can use to find hope, self-love, and love again.

In order to achieve that, one has to A&U • SEPTEMBER 2017

photo by Chris Giles Photography

by Alina Oswald

reach acceptance. That’s easier said than done. It takes practice.

In The Broken Heart Toolkit Thorn explains, “Emotional pain has the potential to be the touch-paper for immense personal growth if we choose to use it as such.

The first step to working with this pain is acceptance of the way things are in this moment. That sounds great in principle....

“Life isn’t ‘black or white.’

Wouldn’t it be easier if we could just accept and live with the ‘grey’?...If we could accept things as they are, be grateful for what we have, and be happy with our lot, wouldn’t life be so much easier?”

Oftentimes, relationships that shape our lives, at least in part, are “like a movie that exists only in our mind.…It’s as if we go into relationships very well-meaning, acting like a Jane Austen character in a romantic costume drama, but potentially coming out the other end like Glenn Close in the movie Fatal Attraction, trying out recipes for rabbit. Once the relationship has imploded, if we can’t emotionally move on (to use another character analogy), at the extreme we can become like Miss Haversham in the book Great Expectations

by Charles Dickens. Jilted, still in her wedding dress, she waited into old age for her man to return, only to eventually fall into the fire.”

In order not to fall prey to fiery, damaging relationships, the author encourages us to look back to each of our relationships, even the failed ones, and learn from them, see them “as a gift” or a lesson in love and life. Only when we learn these lessons can we truly move on with our lives and find that hope, acceptance, self-love and someone to love again.

And when we are ready to move on with our lives, Thorn offers a list of categories we should consider to revisit in our lives: Health and Self, Relationships, Home, Work, and Finances.

In his book, the author explains each one of these categories in great detail.

The first category, “Health and Self,” covers not only physical health, but also emotional health. “Being kind to ourselves” is important, in our lives and our love lives. “The most important relationship we can have is with ourselves.”

Thorn writes. “You occupy the top step of the pyramid.…Sometimes, to rebalance things we have to be purposely selfish—in the most positive way. Having self-worth to put our own wellbeing first is going to be difficult for some, but not doing so is down to old programming

and we have to choose change. Try it— you might be surprised!”

Relationships we have with others are also important. They help us learn who our true friends are, and what individuals “we need to keep at arm’s length for our own preservation.”

Home, Work, and

for the broken-hearted living with HIV. “People living with HIV often experience a sense of urgency about things generally,” Thorn says. “This can lead us to get into relationships that aren’t right for us, especially as we grow older with effective treatment to manage the virus. No one wants to get old and be alone. When we are in a relationship with the wrong person, we’re not available for the possibility that the right person might come along.”

He advises, “Better to have a sound relationship with yourself first. You can be HIV-positive, happy and feel whole without being in a relationship. Get your relationship right with yourself and you will attract the same.”

Paul Thorn’s upcoming book is a new edition of HIV Happy that will also touch on HIV and aging because “none of us are getting any younger and [aging] is going to bring new challenges for people living with the virus.” He further explains, “Two years have passed since the first edition of HIV Happy. The book actually turned my life upside down after it came out! Life became very challenging. It was time for me to really live the book.

I’ve made some mistakes, learnt a lot along the way, and think I can develop some of the ideas that I originally presented further.”

k or c a l b ‘ t ’ n “Life is t be i t ’ n d l u o white.’ W could just we f i r e i s a e e with v i l d n a accept ’?” y e r g ‘ e h t

SEPTEMBER 2017 • A&U

Finances define the building blocks of our lives. They offer a sense of safety and security. But “truly understanding and knowing the difference between what we need and what we want is liberating,” Thorn writes. “It helps us to focus on what’s really important.”

Nowadays, the author tries to focus on and improve the quality of his life, or what he refers to as “QOL.” He started working on this goal by writing a list of things he’s grateful for, seeing the glass half-full.

Maybe what we, the readers, can take from Paul Thorn’s new book is not only a toolkit to help rebalance our lives and the relationships in our lives—with ourselves and with others—but also to learn about the power of gratitude, see the glass half-full and give ourselves a good reason to see it that way.

Written from the author’s heart, and also from his personal experiences, The Broken Heart Toolkit is a workbook that anyone and everyone should keep handy. It is a survival guide in particular

Learn more about Paul Thorn and his books by logging on to: www.brokenhearttoolkit.com.

Follow the author on Twitter @Paul_Thorn.

Alina Oswald reported on the Silence=Death Collective reunion for A&U online.

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A Calling & More In a Memoir, Carol Marsh Traces the Emotional Framework & Evolution of Miriam’s House, A Residence for Homeless Women Living with HIV/AIDS

by T.J. Banks Photographed Exclusively for A&U by Mike Olliver

F

or Carol Marsh, starting Miriam’s House was something that she felt called upon to do. “It felt like coming home,” she recalls, “and I think that is the hallmark of a calling.”

Marsh founded the Washington, D.C., residence for homeless women with HIV/ AIDS in 1996. But in many ways, she had been moving toward this kind of work since her teen years, when she’d read Catherine Marshall’s Christy. The 1967 bestselling novel about a young school teacher doing her damnedest to bring education to children in Appalachia had fired Marsh’s imagination: She’d seen herself as being “a benevolent helper of others” and making sense of all “the cruelty and inequity” in the world. There’d been comfort in “dreaming of a life of service in which I would make things perfect for some small village or group of children. For that they would, of course, love and appreciate me.”

But the path to our true callings is seldom a straight one. We take wrong turns, get waylaid, or lose sight of where we’re headed. “I lost that vision for a while,” Marsh admits. “I moved to Washington, D. C., at thirty-five, and that’s when I reconnected with a passion that had been mine as a teenager.”

She and her husband Tim threw themselves into the work of bringing their vision of Miriam’s House to life. “We didn’t want to create a cookie-cutter program that forced women to comply or leave,” Marsh writes in her memoir Nowhere Else I Want to Be (Inkshares 2016), “so we opted for an open-to-the-possibilities, organic kind of growth that, while it achieved its goal of allowing residents to help shape this new program, also left us in chaos much of the time.” They started out “with a few rules about sobriety and violence and being able to live cooperatively in community”

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but soon realized that they needed to go beyond that.

For the disease was, they saw, only part of the story that each woman brought with her. The other part of the story—call it the back story or the subtext—was even more disturbing. (At Goucher College, she was, Marsh explains, encouraged to dig deeper and go “underneath the stories.”) Juanita, for instance, had begun shooting up at fourteen in an attempt to escape from a reality that included savage beatings by her own mother. Alyssa had been pimped out by a drug-addicted mother when she was twelve; despite that, she still loved and kept reaching out to the parent who never came to see her during her time at Miriam’s House.

Being with Juanita, Alyssa, and the others “transformed me,” Marsh reflects now. “Their generosity of spirit was a major part of that transformation.” The living situation at Miriam’s House was, by its very nature, often volatile. “I was never able to embrace the volatility, but I learned to accept it.” She cites a quote by journalist and social activist Dorothy Day—“Don’t call me a saint. I don’t want to be dismissed so easily”—and comes up with her own variation on that particular theme. “I say to myself, ‘Don’t gloss over the difficulties and the challenges and suffering—the sorrow of Miriam’s House.’ Since I can’t do the work anymore, it would be easy to sentimentalize. Especially when I think of the women living together, watching each other get sicker and die [or] sometimes get better. So the women who were declining were watching other women improve, and the women who were improving were watching the other women decline and were being there for each other. So there’s that dichotomy. That can’t be sentimentalized, and it shouldn’t be.”

She learned a lot about herself in the process. “I had to crash through barriers of low self-esteem and anxiety,” she says.

There were other barriers, too: the sense “of not being a good leader and having judgmental, prideful feelings about the

way the women and my staff spoke, cooked, and held conversations….I had an image of myself as a kind, compassionate, understanding person and thought I knew how I’d be in relationship to the women—as a member of the community and as a leader.” Gradually, she found it easier to step outside of herself and be present for the women, accompanying them to the emergency room or sitting by their bedsides when they were dying. To just be with them, no matter how difficult it was.

Marsh never lost that sense of her work there being a calling. But she also came to realize that that doesn’t necessarily mean A&U • SEPTEMBER 2017

being led “to some small and easy place.

I think that’s a hallmark of a calling—it takes you into the broken places, your own included….You have a mountain-top experience when you get a calling—and everything feels good, possible though scary—but then there’s the descent. As you descend, you need to translate the mountain-top experience into ordinary daily life.”

Marsh captures all this in her book.

But she also shows us how her teenage Christy-like ideal gave way to something more grounded—how “being in service” to others was “gradually transformed into being present” to them. It changed into a kind of companionship that, while never in denial about the very status differential between us, made for an easy camaraderie of reciprocity rather than always a giving/ receiving exchange in which I had all the power.” There was “transformation in changing an adult’s diapers and learning to do it lovingly, without ego or hidden agenda.” It was in bringing an Easter basket to a resident in hospital, only to SEPTEMBER 2017 • A&U

find that she’d just passed away; in trying to make a feeble elderly man understand that his daughter had just died of the virus; and in “patt[ing] the cold, swollen hand” of an intubated woman who was no longer aware of anything in this world.

“That was the thing about Miriam’s House,” Marsh reflects wistfully. “You had to keep giving it permission to break your heart….Over the years I had come to terms with the feeling that the needs were too much, the resources—mine and the world’s—too few, energy and will in too short supply.”

Despite all the emotional wear and tear, she thought that they would all somehow manage to keep on keeping on. During the years at Miriam’s House, however, Marsh’s chronic migraines had become more debilitating. Finally, in 2005, she decided to step down from the directorship. She felt that it was a good move from both “a personal perspective and an organizational perspective since the women were not getting what they deserved from me.”

Miriam’s House is still in operation, but it’s no longer the place that she described so vividly in Nowhere Else I Want to Be. “The staffing, program, and purpose are different because AIDS is, thankfully, no longer a seemingly automatic death sentence. There is effective treatment.”

In the prologue of her book, Marsh talks about “tak[ing] dictation from my heart.” That was, she says now, “part of the grieving process after I had to leave.

I didn’t want to forget the women and how they’d changed me....But when you’re grieving, you’re kind of immersed in a whirl of feelings that make it easy to romanticize the past. That kind of sentiment, however, did a disservice to me and to all we went through together at Miriam’s House.”

For more information about photographer Mike Olliver, log on to: www.mikeolliver.com.

T.J. Banks is the author of Sketch People, A Time for Shadows, Catsong, Houdini, and other books.

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

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by

Project PrEPPY

Chael Needle a new study in the philippines seeks

answers about prevention messaging & implementation

T

he scientific evidence is overwhelming in that we have here [in PrEP] the capacity to interrupt the chain of HIV acquisition and transmission with a tool that is incredibly, highly effective when used properly, and here at amfAR, for thirty years, we’ve tried to be guided by the science. And in this case the science is clear.

PrEP works....which isn’t to say it’s the be all and end all, obviously, but as prevention it’s as good as anything we’ve ever seen and, in most cases, better,” shares Kevin Robert Frost, CEO of amfAR, about why the nonprofit organization has been an early and outspoken advocate for PrEP in the U.S., and steadfast supporter of PrEP implementation studies and demonstration projects abroad as well. “But if people don’t access [PrEP] or won’t access it through the channels that you’ve created, what good is it?”

To help answer these implementation questions with complexity, across different cultural and healthcare contexts, amfAR offers its resources and expertise to those in need. For example, amfAR supported a PrEP study (SWING) among female sex workers in Thailand to understand their attitudes toward the prevention option. “We found a very high degree of acceptability in that context, and that is encouraging to us because we are looking for that kind of high level of potential acceptability in order to expand on projects like this one in order to take these [projects] to other settings,” notes Frost.

One of those other settings is the Philippines, one of the first countries in Asia to introduce PrEP, and what the nonprofit organization and its partners seek to learn through a new study is: In terms of PrEP, how best can healthcare providers reach out to men who have sex with men and transgender women who are at risk of acquiring HIV? And then, how best can they deliver PrEP to those who choose it? As we know, when it comes to effective prevention messaging and encouraging engagement along the continuum of HIV care, one size does not fit all.

MSM and transgender women have been selected for the study because, although HIV prevalence in the Philippines overall is low, they comprise populations

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not only vulnerable to HIV infection but also underserved by larger public-health interventions, particularly in urban areas, and their sexual health has been hampered by social stigma and legal barriers (limited access to condoms and HIV testing and counseling for those under the age of eighteen), which have arguably led to steep increases in rates of infection of late. Across the nation, four out of five people with HIV are MSM. Men who have sex with men, and men who have sex with men and women, account for eighty-five percent of all new HIV infections.

AmfAR has partnered with LoveYourself, a Manila-based LGBT organization, the World Health Organization (WHO) Regional Office for the Western Pacific, and the Research Institute for Tropical Medicine (RITM) at the Philippines Department of Health on a pilot project that seeks to provide concrete answers about best practices when it comes to outreach and implementation among men who have sex with men and transgender women who are at risk of acquiring HIV infection. Frost adds that another important partner is the Philippines government’s Ministry of Health—in the periphery for now, as the project is not being conducted in its clinics, but a vital part of PrEP outreach and roll-out as the project hopes its evidence will inform national PrEP-related policies and guidelines.

A two-year study, Project PrEPPY (PrEP Pilipinas) will enroll 200 MSM and transgender women who are HIV-negative.

PrEP, a daily oral antiretroviral regimen, will be offered free at Love Yourself’s two clinics in metro Manila, along with HIV prevention services that will include routine HIV and STI testing, intensive patient education on PrEP, treatment preparedness and adherence support, in addition to peer support.

Chris Lagman, Deputy Director of LoveYourself and Rossana Ditangco, MD, head of the AIDS Study Group at the RITM are the co-principal investigators of the study.

Significant declines in rates of infection across Asia have proven that treatment as prevention works, says Frost, “particularly in Southeast Asia where, in countries like Thailand, Cambodia and Malaysia, we’ve seen thirty percent reduction.” Frost attributes the reductions partially to TasP,

but points to “comprehensive prevention approaches as well, and a willingness on the parts of governments and ministries of health to be open to being guided by the evidence and not ideology.

“That’s a harder lift in the Philippines because for example, we know that a condoms-in-schools program was recently killed in the Philippines by conservatives. And the conservatives are influenced obviously by the Roman Catholic Church, which plays a very big role in the Philippines. Eighty percent of Filipinos are Catholic.” It becomes harder for NGOs and the government to focus on prevention messaging, especially as, Frost notes, messaging needs to be targeted to youth and it needs to be frank about sex. “And that’s hard to do in countries that do have these very strong ideological movements that influence [messaging].”

Sex-related stigma often prevents individuals from accessing prevention tools, says Frost, even when condoms are given away free in health centers. Preparing for sex is seen as shameful, he continues. Add to that an older generation reluctant to talk about sex and it’s clear that a different tactic is needed to address these challenges.

Project PrEPPY hopes to illuminate how a culturally tailored, community-based healthcare setting might work around some of these issues.

In closing, Frost shares, “We are strong advocates for PrEP, but people shouldn’t misunderstand that to mean we’re not also strong advocates for condoms. We are. We still strongly believe that people who can use condoms should use condoms. PrEP does nothing to address all the other sexually transmitted infections that live in the constellation of infections that people can be exposed to. There are plenty of contexts in which people can’t negotiate condoms, and we know what some of those are. In those contexts, PrEP plays an even bigger role.

[At the end of the day] we would argue that people have to be responsible for their own health, so everyone has to be responsible for making sure they take care of themselves with whatever means that they can.”

For more information, visit: amfar.org.

Chael Needle is Managing Editor of A&U. A&U • SEPTEMBER 2017

by

Lone Star Justice

Chip Alfred a new coalition in texas aims to reform

I

t’s called the Lone Star State to commemorate a single white star that signifies Texas’ battle for independence from Mexico. Now Texans living with HIV are waging another war—fighting a legal system that locks people up for decades for behavior that poses no risk of HIV transmission.

“We need to stop criminalizing people living with HIV,” says Venita Ray, public policy manager at Houston’s Legacy Community Health. Ray, fifty-eight, an African-American attorney, was diagnosed with HIV in 2013. “There’s no evidence to show that criminalization deters behavior, or that it stops transmission. It’s just to punish us for being HIV-positive,” she adds. “If we really want to end the epidemic, we can’t prosecute our way to zero.”

Texas ranks number two in the nation in number of AIDS diagnoses. It’s also the second largest state in the country in both area and population. Unlike most states, however, Texas has no HIV-specific criminal laws. Therefore, the data on the number of HIV criminalization cases and convictions is hard to gather. It also has effectively given prosecutors wide latitude in using general criminal laws to charge HIV-positive defendants with attempted murder and aggravated assault. Texas’ aggravated assault statute makes it a second-degree felony (two to twenty years in jail and a possible fine of $10,000) “to cause serious bodily injury to another or to use or exhibit a deadly weapon in the commission of an assault.” If an aggravated assault is committed against someone the perpetrator knows is a security officer, it’s a first-degree felony (punishable by five to ninety-nine years in prison and a possible fine of $10,000).

What I found most disturbing in researching this article is that the Court of Appeals and the Supreme Court of Texas have consistently upheld aggravated assault convictions in which HIV was considered “a deadly weapon”—even in cases where the only body fluid exchanged was saliva, which has never been documented to transmit HIV. An HIV-positive man from Texas who spat at a police officer during his 2006 arSEPTEMBER 2017 • A&U

rest for being drunk and disorderly was sentenced to thirty-five years behind bars by a Dallas court. The Court of Appeals affirmed the verdict, which mandates that the defendant serve at least half of his sentence before being eligible for parole.

This was because the jury found that his saliva was a deadly weapon.

In the Texas legislature, there have been recent efforts to enact laws that would make it easier for prosecutors to invade the privacy of HIV-positive defendants and build criminal cases against them for no-risk behavior like spitting. Thanks to advocates like Venita Ray, none of this legislation has passed.

“When I’m standing up in front of the legislature, I’m not speaking of a hypothetical person. I’m saying, ‘What you just did impacts me.’ That has power.” Ray, with the support of The Sero Project’s Assistant Director Robert Suttle and Organizing and Training Coordinator Tami Haught under the umbrella of Sero’s Network Empowerment Project, created Texans Living with HIV (TLHIV), the first statewide network of its kind in the U.S. “This network enables Texans with HIV to determine their own priorities, select and hold accountable leadership of their own choosing and to speak with a collective voice,” says Sean Strub, executive director of Sero. “Texas now has the organizational infrastructure to be better prepared to mobilize and advocate on a whole range of issues that affect people living with HIV.” Venita Ray tells A&U the new coalition of about twenty advocates will focus on ending isolation for PLHIV and eliminating stigma. “The same communities that

are already disproportionately impacted by the criminal justice system are the same people impacted most by HIV criminalization—black people, brown people, people living in poverty.”

TLHIV will take on issues that impact the quality of life for people with HIV and criminalization will be one of those. “We want to be that collective voice for people living with HIV in the state of Texas,” Ray explains. “We’re building power amongst ourselves.” The key, she says, is creating an environment where individuals feel safe to stand up, show up and speak up. “We’re building an army and we need them all.

I’m a grandmother; I’m an auntie; I’m a yoga teacher. The more people see people like me or your Bible school teacher, the more we humanize this disease. The best thing I ever did was deciding not to be invisible and not be silent anymore.”

For more information, visit: www.legacycommunityhealth.org/introducing-texans-living-with-hiv or www.seroproject.com/network-empowerment-project.

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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illustration by Timothy J. Haines

hiv criminalization & find a united voice for people living with hiv

Revving Up

investigational agent abx 464 seeks to reduce hiv reservoirs

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reservoir reduction of 40% (27%–67%).

These results showed ABX 464 to be the first intervention to show such a decrease.

No pharmacokinectic interactions were seen with ABX 464 and boosted darunavir.

In total, there have been 150 patients who have been treated with ABX 464 with safety data showing the agent to be quite benign. As with many of the current antiretrovirals, the main side effects exhibited have been headache and nausea within the first few days of treatment. These effects diminished with time. In the IIa study, one participant withdrew from the study due to Grade I/II abdominal cramps, which subsided after cessation of the study drug, and a second was discontinued due to viral escape with darunavir before Day 28.

It’s important to note that clearing viral reservoirs is unknown territory and we have no definitive knowledge of how long this would take or if it is even possible. A twenty-eight-day study such as this (at the time the longest length this study could be approved for) may or may not be a significant amount of time regardless of what drug or strategy is used. So, a study such as this, in addition to testing the safety and efficacy of a drug, helps us to gain a better understanding of the process of studying reservoir clearance.

Researchers have found that the amount of HIV DNA in viral reservoirs is important and differs from person to per-

son. The average amount is around 100– 500 per million PBMC’s. In a previous, unrelated study, it was found that when a high amount of HIV DNA is present, the likelihood of disease progression is greater than with a lower amount.

However, it is still unknown how much of a decrease in reservoirs is needed to be sufficient to prevent new viral replication when all treatments are stopped.

“In terms of research, we all have focused a lot on bringing the viral load down but work towards clearing the sanctuary regions [viral reservoirs] is in its infancy.

To me, an undetectable viral load is not enough,” stated Dr. Steens.

Studies such as this not only test the safety and efficacy of a drug, but help us to better understand the HIV reservoir.

Further studies with longer periods of treatment are needed to ascertain the full benefit of ABX 464 and are said to be forthcoming.

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.

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illustration by Timothy J. Haines

BX 464 is making its way through clinical trials, showing strong potential as an HIV therapeutic and a possible HIV cure strategy component. The drug (made by a French biotech company called Abivax) is a first-in-class, oral, small anti-viral molecule and is currently in Phase II clinical trials.

ABX 464 targets an HIV viral protein called rev, an essential component in the process of HIV replication. In studies of ABX 464 in a humanized mouse model, a sustained viral load suppression was demonstrated for up to six weeks after ABX 464 treatment was stopped, showing cause for human studies to ascertain if this effect will be substantiated in people living with HIV. Data released in May of this year from a small safety and efficacy study showed the potential of ABX 464 to reduce HIV reservoirs and is a first step in further measuring the effect of the drug.

As a Phase IIa study, the primary objective was assessing safety, as well as assessing the drug’s pharmacokinetic effects. A secondary objective was determining any reduction of HIV reservoirs through examining total HIV DNA in peripheral blood mononuclear cells (PMBC cells).

A total of thirty participants, all of whom were fully suppressed on boosted darunavir, were enrolled in the study in Spain, Belgium, and France. Participants were given either ABX 464 or placebo at a 3:1 ratio, for a total of twenty-eight days, while they continued their antiretroviral regimen. The study drug/placebo and boosted darunavir were then discontinued.

According to Dr. Jean-Marc Steens, Chief Medical Officer of Abivax, it is difficult to measure the significance of a decrease within patients who had fewer than 50 copies of HIV DNA/Mio PBMCs. As such, those with under 50 copies of HIV DNA/Mio PBMC’s were excluded from analysis.

Responders needed to meet two criteria: viral reservoir reductions of more than 25% of total HIV DNA in PBMCs and an absolute reduction of at least 50 copies.

Half of the evaluable ABX 464-treated study participants were considered “responders” and experienced a mean viral

2017 BLACK&BLUE

- SPECIAL EDITION MTL 375 -

OCTOBER 5 - 9 2017 MAIN EVENT

OCTOBER 8TH (ALL NIGHT LONG)

BBCM.ORG

E R U T CUL S THE

AID OF

BOOKS

Ghosts of St. Vincent’s

by Tom Eubanks tomus

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riting book reviews on material relating to HIV every month is tough, sometimes. There is only so much material on the subject published in the various genres, and finding quality work that adds to the conversation around the topic is my major goal. I’ve looked at more than one self-published title and have been disappointed at times. Not with this month’s selection.

Ghosts of St. Vincent’s is not only an incredible read, it is an imaginative and technically proficient one. I’ve read many AIDS memoirs in my time and have had the privilege of reviewing a few but Eubank’s book turns the AIDS memoir on its head. These memoirs, while all important historical documents, can sometimes get a bit repetitive. Eubanks stakes out new and important creative territory. Is it a memoir? Is it a novel? The author willingly leaves that up to the reader.

What first caught my eye is the fabled and totemic NYC medical institution that the book centers around, St. Vincent’s Hospital. Begun as a charitable institution to serve the city’s indigent in the mid-nineteenth century by the Roman Catholic Sisters of Mercy, the hospital became home to New York’s first AIDS Ward at the beginning of the plague. Eubanks himself spent many months on its seventh floor in the mid-nineties expecting to die until the debut of the cocktail in ’96. His memoir takes him from his earliest days in the East Village to later years in the West Village.

His story is brilliantly interspersed with chapters on some extraordinary inpatients throughout the hospital’s history. It’s here that he blends history and memoir with fiction, taking delightful artistic license.

We come across both the celebrated and odious of the nineteenth and twentieth

60

centuries with appearances by Robert Mapplethorpe, Ed Koch, Cardinal Spellman, and the uncle of poet Edna St. Vincent Millay, whose middle name came from the hospital who saved her uncle’s life.

As a memoir alone, however, this is a great book. Eubanks captures perfectly the pain and loss of the period and exactly what it was like to receive the news of what was then a death sentence. He also recounts the dichotomy of being saved at the last minute by yet another pharmaceutical when you had been so let down by them already. It’s a mixed bag of emotions for some people who are long expecting to die after much suffering only to be saved at the last minute. I can’t imagine how a publisher has failed to recognize how good The Ghosts of St. Vincent’s is. St. Vincent’s, like so much of its neighborhood, has now been converted into luxury housing, but this book captures its place in the history of New York adeptly and with much spirit.

—John Francis Leonard

Sistah’s Speak

by Khafre Kujichagulia Abif Ubuntu Press

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heir voices come at us from all directions, catching at our heart-strings. It’s tempting to call the women writers in Sistah’s Speak a Greek chorus because they are commenting on a major issue and the emotions underlying it. There’s a problem with that comparison, though: a Greek chorus is essentially homogenous, all of the members voicing the same emotion.

The writers in Sistah’s Speak are all living with HIV/AIDS, but each one brings her own light to bear on the subject. “No

matter how I look or how active I understand clearly with AIDS you can get hit from nowhere and it is what it is,” observes Rae Lewis-Thornton. At the same time, she savors the sight and feel of her baby daughter sleeping alongside her and the morning birdsong: She has learned to take nothing for granted. “Today, I had perspective and with perspective, I could smile….I was filled with nothing but gratitude this morning in spite of my life with AIDS.” Maria T. Meija writes about living twenty-six years with HIV and her work with The Well Project, a worldwide resource for women with HIV, their caregivers, and their healthcare providers. Lynda Arnold addresses the “horrific and progressive memory loss” that has played a part in her journey with AIDS. “Memories are supposed to be our footprints in our mind and hearts,” she says with an aching wistfulness. “My long-term memory is so shot, I feel like it’s left me in the shambles and no one is there to help me pick up the pieces.” For Vickie Lynn, it’s about being caught between

the proverbial rock and a hard place: taking her “dream job, one that I cannot pass up” but worrying that the job will cause her to lose her badly needed Medicaid.

Each of these voices is strong and vital; each woman’s story is critical to our understanding of the impact of HIV/AIDS. Maybe the sistahs in this book do form a Greek chorus, after all—a more real one that reminds us, as Rachel Ann puts it, of the fact that the disease “is all of us” and has many different faces.

—T.J. Banks John Francis Leonard writes the Bright Lights, Small City column for A&U. T.J. Banks reported on PAWS in this issue.

A&U • SEPTEMBER 2017

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A Calendar of Events

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PrEP Champions

continued from page 39

or the fifth year, renowned dancers and emerging stars will toe the line at the Hudson Valley Dance Festival for two performances on October 7, 2017. The performances, at 2 and 5 p.m. at the 115-year-old wooden warehouse at Historic Catskill Point in Catskill, New York, will benefit Dancers Responding to AIDS (DRA).

Dancers Responding to AIDS, a program of Broadway Cares/ Equity Fights AIDS, was founded in 1991 by former Paul Taylor Dance Company members Denise Roberts Hurlin and Hernando Cortez. Since 1988, Broadway Cares has raised more than $285 million for essential services for people with AIDS and other critical illnesses across the United States. In its first four years, the Hudson Valley Dance Festival raised $460,397 for DRA’s beneficiaries, including nine organizations in the Hudson Valley.

Tickets to the Hudson Valley Dance Festival are on sale now.

Prices range from $40 for a single ticket to $275 for a special VIP daytrip package from New York City that includes roundtrip luxury bus transportation, a tour of the Thomas Cole National Historic Site with a champagne luncheon, a ticket to the 2 p.m. performance and a cocktail reception at W&G SPACE in Catskill, a beautifully renovated art studio on Catskill Creek, after the show. Sponsorship opportunities also are available.

For more information and to purchase tickets, log on to: www.dradance.org.

“I want to see PrEP messages when I’m at the gym, shopping, getting my nails or hair done, when I open my apps, listen to Pandora, and most importantly, when I visit my OB/GYN.” Making the decision to start on PrEP has given Nikole peace of mind and a sense of freedom. “I definitely feel more protected, confident in making healthy sexual decisions, and more in control when negotiating what type of sex I will engage in.”

Nikole says she is already prepared to start a dialogue with someone about PrEP. Everywhere she goes, she brings PrEP material with her. “When discussing PrEP with people, the first reaction is always, ‘OMG, for real?’ There is a pill that prevents you from getting HIV? Why haven’t I heard about this?” She explains that most of these conversations end up being about educating people and gaining their trust.

“Especially in communities of color, people are skeptical to try a pill that is used to treat HIV-positive individuals. The more information people have, the better equipped they are to make informed decisions about their health.”

The goals of HIVE’s blog are to reduce stigma and to give women a platform for their voices. “You see gay men on PrEP Facebook groups and they’re very proud to be having the sex they want. Women

62

get slut-shamed for doing this,” Watson explains.

“We want women to feel empowered to own their casual sex lives and use PrEP if that makes them feel safer.” For several of the women who have shared their PrEP stories for HIVE, it was cathartic. “They feel powerful and valuable,” she says, noting that these outspoken women are having an impact. More women are learning about PrEP and asking HIVE for information and referrals. The objective is to create buzz around PrEP, and to encourage more PrEP Champions to spread the word in their communities.

HIVE also features these storytellers online with the Hangouts with HIVE: PrEP Champions Lead the Way project, which offers guidance to medical providers and outreach workers about how to reach and engage communities around PrEP. “PrEP is for anybody who feels they need it,” Watson emphasizes. “HIV prevention is not one size fits all. Everybody should have the knowledge about every HIV prevention option and choose the one

or ones that make them feel comfortable and safe.”

For more information, visit www.hiveonline.org.

To find a PrEP provider in your area, visit: https://pleaseprepme.org.

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

Chip Alfred, an Editor at Large at A&U, is the Director of Development & Communications at Philadelphia FIGHT. A&U • SEPTEMBER 2017

SEPTEMBER 2017 â&#x20AC;¢ A&U

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Survival Guide

[a portrait by sean black]

“Living with HIV for nearly thirty years has been one of the greatest challenges of my life. At fifty-three, I am happier and healthier than ever. I am especially grateful to be part of the long-term survivor community in San Francisco, which helped me come out of isolation, heal, and prosper.”

Philip Charles Crawford

Philip is a high school librarian, activist and educator who has advocated for the integration of Gender and LGBT Studies in K-12 schools for the past twenty-five years. He is the author of Wonder Woman: The Fruit of All Evil (2010) and lives happily in San Francisco with his chosen family: Shua, William, and their kitty, Emily Pickles.

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

A&U • SEPTEMBER 2017

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

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

With support behind you, the only way to go is forward.

Letâ&#x20AC;&#x2122;s Grow Old Together See what life with HIV looks like from diagnosis through grandkids with a little help from Walgreens. Meet Joshua and Patricia and hear their story at Walgreens.com/LetsGrowOldTogether. Š2017 Walgreen Co. All rights reserved.

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