A&U September 2015

SEPTEMBER 2015 • ISSUE 251 • AMERICA’S

dr. rachael ROSS

THE CO-HOST OF THE DOCTORS ADVOCATES FOR HIV EDUCATION, FEMALE CONDOMS & THE PLEASURES OF OUTERCOURSE

georgia on his mind

DEREK CANAS GEARS UP FOR A NEW LIFE IN AIDS ACTIVISM

BAILANDO POR UNA CAUSA

JOSEPH RIVERA HELPS SET THE STAGE FOR LATINO HEALTH

plus • Dontá Morrison • Desert Migration

What is STRIBILD? STRIBILD is a prescription medicine used to treat HIV-1 in adults who have never taken HIV-1 medicines before.

STRIBILD can also replace current HIV-1 medicines for some adults who have an undetectable viral load (less than 50 copies/mL of virus in their blood) and whose healthcare provider determines that they meet certain other requirements. STRIBILD combines 4 medicines into 1 pill to be taken once a day with food.

STRIBILD is a complete single tablet regimen and should not be used with other HIV-1 medicines.

STRIBILD does not cure HIV-1 infection or AIDS. To control HIV-1 infection and decrease HIV-related illnesses you must keep taking STRIBILD. 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 STRIBILD? STRIBILD can cause serious side effects: • Build-up of an acid in your blood (lactic acidosis), which is a serious medical emergency. Symptoms of lactic acidosis include feeling very weak or tired, unusual (not normal) muscle pain, trouble breathing, stomach pain with nausea or vomiting, feeling cold especially in your arms and legs, feeling dizzy or lightheaded, and/or a fast or irregular heartbeat.

• Serious liver problems. The liver may become large (hepatomegaly) and fatty (steatosis). Symptoms of liver problems include your skin or the white part of your eyes turns yellow (jaundice), dark “tea-colored” urine, light-colored bowel movements (stools), loss of appetite for several days or longer, nausea, and/or stomach pain.

• You may be more likely to get lactic acidosis or serious liver problems if you are female, very overweight (obese), or have been taking STRIBILD for a long time. In some cases, these serious conditions have led to death. Call your healthcare provider right away if you have any symptoms of these conditions.

• Worsening of hepatitis B (HBV) infection. If you also have HBV and stop taking STRIBILD, your hepatitis may suddenly get worse. Do not stop taking STRIBILD without first talking to your healthcare provider, as they will need to monitor your health. STRIBILD is not approved for the treatment of HBV.

Who should not take STRIBILD? Do not take STRIBILD if you: • Take a medicine that contains: alfuzosin, carbamazepine, dihydroergotamine, ergotamine, methylergonovine, cisapride, lovastatin, simvastatin, pimozide, sildenafil when used for lung problems (Revatio®), triazolam, oral midazolam, phenobarbital, phenytoin, rifampin or the herbal supplement St. John’s wort.

• For a list of brand names for these medicines, please see the Brief Summary on the following pages.

• Take any other medicines to treat HIV-1 infection, or the medicine adefovir (Hepsera®).

What are the other possible side effects of STRIBILD? Serious side effects of STRIBILD may also include: • New or worse kidney problems, including kidney failure. Your healthcare provider should do regular blood and urine tests to check your kidneys before and during treatment with STRIBILD. If you develop kidney problems, your healthcare provider may tell you to stop taking STRIBILD. • Bone problems, including bone pain or bones getting soft or thin, which may lead to fractures. Your healthcare provider may do tests to check your bones.

• Changes in body fat can happen in people taking HIV-1 medicines.

• 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 STRIBILD. The most common side effects of STRIBILD include nausea and diarrhea. 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 STRIBILD? • All your health problems. Be sure to tell your healthcare provider if you have or had any kidney, bone, or liver problems, including hepatitis virus infection.

• All the medicines you take, including prescription and nonprescription medicines, vitamins, and herbal supplements. STRIBILD may affect the way other medicines work, and other medicines may affect how STRIBILD works. Keep a list of all your medicines and show it to your healthcare provider and pharmacist.

Do not start any new medicines while taking STRIBILD without first talking with your healthcare provider.

• If you take hormone-based birth control (pills, patches, rings, shots, etc).

• If you take antacids. Take antacids at least 2 hours before or after you take STRIBILD. • If you are pregnant or plan to become pregnant. It is not known if STRIBILD can harm your unborn baby. Tell your healthcare provider if you become pregnant while taking STRIBILD. • If you are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed.

HIV-1 can be passed to the baby in breast milk. Also, some medicines in STRIBILD can pass into breast milk, and it is not known if this can harm the baby.

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 Brief Summary of full Prescribing Information with important warnings on the following pages. *STRIBILD is a combination of the medicines TRUVADA (emtricitabine and tenofovir disoproxil fumarate), TYBOST (cobicistat), and VITEKTA (elvitegravir).

STRIBILD is a prescription medicine used to treat HIV-1 in adults who have never taken HIV-1 medicines before.

STRIBILD can also replace current HIV-1 medicines for some adults who have an undetectable viral load (less than 50 copies/mL of virus in their blood) and whose healthcare provider determines that they meet certain other requirements. STRIBILD does not cure HIV-1 or AIDS.

I started my personal revolution Talk to your healthcare provider about HIV-1 treatment.

STRIBILD is a complete HIV-1 treatment in 1 pill, once a day that combines the medicines in TRUVADA + TYBOST + VITEKTA.* Ask if it’s right for you.

www.STRIBILD.com

Patient Information STRIBILD (STRY-bild) (elvitegravir 150 mg/cobicistat 150 mg/emtricitabine 200 mg/ tenofovir disoproxil fumarate 300 mg) tablets ®

Brief summary of full Prescribing Information. For more information, please see the full Prescribing Information, including Patient Information.

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

• STRIBILD is a complete HIV-1 medicine and should not be used with any other HIV-1 medicines.

• STRIBILD does not cure HIV-1 or AIDS. You must stay on continuous HIV-1 therapy to control HIV-1 infection and decrease HIV-related illnesses.

• Ask your healthcare provider about how to prevent passing HIV-1 to others. Do not share or reuse needles, injection equipment, or personal items that can have blood or body fluids on them. Do not have sex without protection. Always practice safer sex by using a latex or polyurethane condom to lower the chance of sexual contact with semen, vaginal secretions, or blood.

What is the most important information I should know about STRIBILD? STRIBILD can cause serious side effects, including: 1. Build-up of lactic acid in your blood (lactic acidosis).

Lactic acidosis can happen in some people who take STRIBILD or similar (nucleoside analogs) medicines. Lactic acidosis is a serious medical emergency that can lead to death. Lactic acidosis can be hard to identify early, because the symptoms could seem like symptoms of other health problems. Call your healthcare provider right away if you get any of the following symptoms which could be signs of lactic acidosis:

2. Severe liver problems. Severe liver problems can happen in people who take STRIBILD. In some cases, these liver problems can lead to death. Your liver may become large (hepatomegaly) and you may develop fat in your liver (steatosis). Call your healthcare provider right away if you get any of the following symptoms of liver problems: • your skin or the white part of your eyes turns yellow (jaundice) • dark “tea-colored” urine • light-colored bowel movements (stools) • loss of appetite for several days or longer • nausea • stomach pain You may be more likely to get lactic acidosis or severe liver problems if you are female, very overweight (obese), or have been taking STRIBILD for a long time.

3. Worsening of Hepatitis B infection. If you have hepatitis B virus (HBV) infection and take STRIBILD, your HBV may get worse (flare-up) if you stop taking STRIBILD. A “flare-up” is when your HBV infection suddenly returns in a worse way than before.

• Do not run out of STRIBILD. Refill your prescription or talk to your healthcare provider before your STRIBILD is all gone • Do not stop taking STRIBILD without first talking to your healthcare provider • If you stop taking STRIBILD, your healthcare provider will need to check your health often and do blood tests regularly for several months to check your HBV infection. Tell your healthcare provider about any new or unusual symptoms you may have after you stop taking STRIBILD Who should not take STRIBILD? Do not take STRIBILD if you also take a medicine that contains: • adefovir (Hepsera®) • alfuzosin hydrochloride (Uroxatral®) • carbamazepine (Carbatrol®, Epitol®, Equetro®, Tegretol®, Tegretol-XR®, Teril®) • cisapride (Propulsid®, Propulsid Quicksolv®)

• have trouble breathing

• ergot-containing medicines, including: dihydroergotamine mesylate (D.H.E. 45®, Migranal®), ergotamine tartrate (Cafergot®, Migergot®, Ergostat®, Medihaler Ergotamine®, Wigraine®, Wigrettes®), and methylergonovine maleate (Ergotrate®, Methergine®)

• have stomach pain with nausea or vomiting

• lovastatin (Advicor®, Altoprev®, Mevacor®)

• feel cold, especially in your arms and legs

• midazolam, when taken by mouth

• feel dizzy or lightheaded

• phenobarbital (Luminal®)

• have a fast or irregular heartbeat

• phenytoin (Dilantin®, Phenytek®)

• feel very weak or tired • have unusual (not normal) muscle pain

What should I tell my healthcare provider before taking STRIBILD?

• pimozide (Orap®) • rifampin (Rifadin , Rifamate , Rifater , Rimactane ) ®

®

®

®

• sildenafil (Revatio®), when used for treating lung problems • simvastatin (Simcor®, Vytorin®, Zocor®) • triazolam (Halcion ) ®

• the herb St. John’s wort Do not take STRIBILD if you also take any other HIV-1 medicines.

STRIBILD is not for use in people who are less than 18 years old.

What are the possible side effects of STRIBILD? STRIBILD may cause the following serious side effects:

Tell your healthcare provider about all your medical conditions, including: • If you have or had any kidney, bone, or liver problems, including hepatitis B infection • If you are pregnant or plan to become pregnant. It is not known if STRIBILD can harm your unborn baby. Tell your healthcare provider if you become pregnant while taking STRIBILD. - There is a pregnancy registry for women who take antiviral medicines during pregnancy. The purpose of this registry is to collect information about the health of you and your baby. Talk with your healthcare provider about how you can take part in this registry.

• See “What is the most important information I should know about STRIBILD?”

• If you are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed if you take STRIBILD.

• New or worse kidney problems, including kidney failure.

Your healthcare provider should do blood and urine tests to check your kidneys before you start and while you are taking STRIBILD. Your healthcare provider may tell you to stop taking STRIBILD if you develop new or worse kidney problems.

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

• Bone problems can happen in some people who take STRIBILD. Bone problems include bone pain, softening or thinning (which may lead to fractures). Your healthcare provider may need to do tests to check your bones.

• Changes in body fat can happen in people who take HIV-1 medicine. These changes may include increased amount of fat in the upper back and neck (“buffalo hump”), breast, and around the middle of your body (trunk). Loss of fat from the legs, arms and face may also happen. The exact cause and long-term health effects of these conditions are not known.

• Changes in your immune system (Immune Reconstitution Syndrome) can happen when you start taking HIV-1 medicines.

Your immune system may get stronger and begin to fight infections that have been hidden in your body for a long time. Tell your healthcare provider right away if you start having any new symptoms after starting your HIV-1 medicine.

The most common side effects of STRIBILD include: • Nausea • Diarrhea Tell your healthcare provider if you have any side effect that bothers you or that does not go away.

• These are not all the possible side effects of STRIBILD. For more information, ask your healthcare provider.

• Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.

- Two of the medicines in STRIBILD can pass to your baby in your breast milk. It is not known if the other medicines in STRIBILD can pass into your breast milk.

- Talk with your healthcare provider about the best way to feed your baby.

Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements: • Keep a list of all your medicines and show it to your healthcare provider and pharmacist. Some medicines may interact with STRIBILD. Do not start any new medicines while you are taking STRIBILD without first talking with your healthcare provider.

• Do not take STRIBILD with any products that contain the herbal supplement St. John’s wort.

• If you take a medicine for indigestion (antacid) that contains aluminum and magnesium hydroxide or calcium carbonate, take it at least 2 hours before or after you take STRIBILD. Keep STRIBILD and all medicines out of reach of children.

This Brief Summary summarizes the most important information about STRIBILD. If you would like more information, talk with your healthcare provider. You can also ask your healthcare provider or pharmacist for information about STRIBILD that is written for health professionals, or call 1-800-445-3235 or go to www.STRIBILD.com.

Issued: July 2015

GILEAD, the GILEAD Logo, HEPSERA, STRIBILD, and the STRIBILD Logo are trademarks of Gilead Sciences, Inc., or its related companies. All other marks referenced herein are the property of their respective owners. © 2015 Gilead Sciences, Inc. All rights reserved. STBC0195 08/15

Benefiting

I’ve had a long history working with people living with AIDS, so I knew this was a community that I wanted to be a part of.

— Nkatha, Rider No. 95

Boston

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ork o new Y

015

Septe

7, 2 2 – 5 2 r mbe

brakingaidsride.org 866-858-6877

c o n t e n t s September 2015

38 Cover With Her No-Nonsense Approach, Dr. Rachael Ross of TV’s The Doctors Talks with A&U’s Dann Dulin About Rethinking Sexual Pleasure, HIV Risk, PrEP as a Prevention Tool & Outreach Campaigns

Departments

Features 28 A Moving Migration A New Doc Examines Aging with HIV in the California Desert

6

Frontdesk

8

Mailbox

9

NewsBreak

30 Gallery An Exhibit Brings the Fight Against AIDS Back Home

16

Ruby’s Rap

19

Poetry

34 Hey Mr. DJ! Derek Canas, aka D-REK, Remixes the Fight Against HIV Stigma 44 Dancing for a Cause Joseph Rivera Helps Improve Health Outcomes in Latino Communities 48 Keeping the Faith Advocate Dontá Morrison Challenges AIDS Phobia in Faith Communities 50 Escape to Survival Magician Daniel Bauer Proves Surviving with HIV Is No Illusion cover by Sean Black

viewfinder 24

TYing It All Together

26

Just*in Time

lifeguide 54

Treatment Horizons

56

Hep Talk

58

The Whole Perspective

60

The Culture of AIDS

62

Lifelines

64

Survival Guide

A&U Frontdesk

Love Is All Around

S

ometimes all you need is love.

Like the Beatles song says, “All you need is love...” Love of a good man. Got that. Love of a good doctor. Got that too. But what is a little unexpected is how much the A&U reader has shown us love; in fact, your support in the form of buying copies of Art & Understanding: Literature from the First Twenty Years of A&U, whether it’s from Amazon, your local bookstore, or directly from the magazine, has reinvigorated our mission to publish new fiction, poetry, drama, creative nonfiction, as well as features on AIDS advocates and living well with HIV, for the foreseeable future. I’m pleased to announce that the anthology is sold out! So a second printing is on order. (And don’t forget, if you’re in the New York City area on September 17, stop by the Linda Stein Studio at 6 p.m., to meet anthology writers and hear musings about the early years of the magazine.)

Now that we’re well into out third decade of publishing, I anticipate the need to update the contents of the anthology.

For the latest voices inside A&U are now reflecting the wider spread use of PrEP, the increased coverage of antiretrovirals in developing countries, and the idea that a cure is not fiction anymore, but could actually become fact (according to the world’s largest funder of HIV vaccines, the Bill & Melinda Gates Foundation). But before I get carried away about the success of the literary aspects of A&U, it’s worth noting that there are still 50,000 new infections every year in the United States. And close to two million unnecessary infections on this planet. So the fight is not over. We need to spread more love.

We need to blanket Capitol Hill with Love. We need to keep Congress in the loop that as Americans living with HIV—we matter! But in my twenty-five years of publishing A&U, I still see how disconnected Washington is from the epidemic. In President Obama’s five-year plan (projected out to 2020), America has reached certain ambiguous milestones; but over 167,000 Americans are estimated to be unaware of their

A M E R I C A’ S A I D S M A G A Z I N E issue 251 vol. 24 no. 9 September 2015 editorial offices: (518) 426-9010 fax: (518) 436-5354

status and, as the United States Conference on AIDS, convening this month in D.C., reminds, our communities are faced with mounting disparities when it comes to accessing healthcare.

We need to love our sexual partners enough to protect our health, whether we are positive or negative. In this month’s cover story, Dr. Rachael Ross, one of the cohosts of the popular TV show The Doctors, has much to say about combining pleasure with knowledge, assessing risk when it comes to sex, and reframing HIV prevention outreach, as well as keeping the conversation going. About the media, she notes: “What saddens me is that when it’s Black HIV Awareness Day or World AIDS Day, it’s virtually impossible to get booked on a show to talk about it. It’s become old news and nobody’s interested in the subject right now. What they’d rather have me talk about is how to give somebody a great blowjob!” But she also encourages everyone to just talk about sex because talking can lead to action.

Most importantly, we need to love ourselves. We need to find support or seek counseling to protect against the corrosive effects of stigma, discriminatory attitudes and practices, and the policing of our positive bodies. The benefits of antiretorvirals mean little if we cannot also unlock freedom through securing our basic needs, our peace of mind, our empowerment. This issue features interviews with advocates who are doing just that—living with or affected by HIV and letting their love radiate out into society. Meet Derek Canas, Joseph Rivera, Dontá Morrison, and Daniel Bauer. I’d introduce you to Phill Wilson, but I’m sure you know who he is!

Together they are working to expand treatment access, end HIV stigma, bring more services to the South, dismantle AIDS phobia, and motivate others. Let’s round up our jukebox money and head on down to the Love Shack!

DAVID WAGGONER

Editor in Chief & Publisher David Waggoner Managing Editor: Michael Needle Senior Editors: Dann Dulin, Sean Black Editor at Large: Chip Alfred Special Projects Editor: Lester Strong Literary Editor: Brent Calderwood Arts Editor: Alina Oswald Consulting Editor: Nick Steele Copy Editor: Maureen Hunter Contributing Editors: Sarah Churchill Downes, Reed Massengill, Kelly McQuain, Lesléa Newman, Robert E. Penn Contributing Writers: Noël Alumit, V. Anderson, Heather Arculeo, Larry Buhl, Ruby Comer, Nancy Ellegate, Diane Goettel, Sally Hessney, Keiko Lane, Angela Leroux-Lindsey, Sherri Lewis, Mark Rebernik, Dale Reynolds, Elizabeth Rodgers, David Rosenberg, Corey Saucier, Mariel Selbovitz, Justin B. Terry-Smith, Patricia Nell Warren, Chuck Willman, Jeannie Wraight, Robert Zukowski Art Director: Timothy J. Haines Contributing Photographers: Jordan Ancel, Davidd Batalon, Mark Bennington, Tom Bianchi, Sean Black, Adam Bouska, Brian Bowen Smith, Fred Brashear, Jr., Tim Courtney, Duane Cramer, Stephen Churchill Downes, Greg Gorman, Francis Hills, Renée Jacobs, 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 A&U (ISSN 1074-0872) is published by Art & Understanding, Inc., 25 Monroe St., Suite 205, Albany, NY 12210-2743, 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. ©2015 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 12210-2743, USA

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

TM

AIDS WALK

LOS ANGELES OCT. 11, 2015 A fundraising walk starting and ending in West Hollywood Benefiting

and more than 20 other L.A. County AIDS service organizations.

SIGN UP TODAY! aidswalk.net

213.201.WALK PREMIER SPONSORS

A special thank you to A&U Magazine #aidswalkla aidswalkla

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Created and produced by MZA Events. AIDS Walk Founder/Senior Organizer: Craig R. Miller. Š MZA Events, 2015

A&U Mailbox

x o b l i ma Fans of Franzese Daniel Franzese [cover story, “Loving Life,”

by Dann Dulin, July 2015] is that loveable big bear that we all love to see in movies and TV; you know, the one that looks like a lumberjack

It’s really wonderful to hear that Daniel Franzese has hooked up with such a tremendous organization as The Elizabeth Taylor AIDS Foundation. I’m sure that as an ambassador for ETAF he will make a very positive impact on HIV/AIDS as did the late great Elizabeth Taylor. Enough cannot be said about the great good that Elizabeth Taylor did for all of us. Good luck, Daniel, in being an outspoken spokesperson for AIDS. —George Gregory McMichael Lansing, Michigan

Touchdown for Alabama We all need to be gladdened that a great football player like Wade Davis is going to lead the charge and bring PrEP to the finish line in Alabama [“PrEPing Up for the Fight,” by Alina Oswald, July 2015].

PrEP is the wave of the future in fighting AIDS and we all need to get on board the team and be willing to fight this game to the end of AIDS. The South is in deep trouble, with more cases of HIV and AIDS popping up all the time. It’s all about pov-

“It’s really wonderful to hear that Daniel Franzese has hooked up with such a tremendous organization as The Elizabeth Taylor AIDS Foundation. I’m sure that as an ambassador for ETAF he will make a very positive impact on HIV/AIDS as did the late great Elizabeth Taylor.”

8

A Woman’s Willpower Boy oh boy! Reading Heather Arculeo’s most recent “A Woman’s Voice” column [July 2015] was a stunning if not shocking revelation on what one person can endure and survive in life. It’s like reading a horror story; it goes from one bad thing to another. You think it’s going to get better after each trauma, but no, there is more trauma to come.

Heather learns that her husband is cheating on her with other men and then she finds out that she has contracted HIV, probably from him. It is such a sad story to read, but thanks to Heather’s strength and willpower she manages to rise to the occasion and overcome all these traumas. What a Woman!

—Jean Fortescue Tacoma, Washington

erty, lack of education, lack of healthcare, lack of resources, and ongoing stigma. The South has the worst healthcare in the U.S. It’s time to bring PrEP to the South!

—Varley L. Muson Birmingham, Alabama

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

A&U • SEPTEMBER 2015

photo by Sean Black

from the Ozarks. I just love characters like that—they may look scary in the beginning but at the end of the story you get to love them. He was great in the show Looking. Daniel explains, “Here’s this educated gay male actor, who’s playing an HIV-positive part that’s looking for information for the first time. Then here’s another person who’s just had HIV for a year and he’s also learning things for the first time.

Then I knew...that information was not getting out to those who needed to hear it. I was angry.

I had to do everything I could to use my voice so people could be informed. Whether it’d be on a large scale like an interview with A&U or something as a conversation with a bunch of guys at a bar. I haven’t been able to shut up.”

Thanks, Daniel, for caring.

—Marsha Entshew Key West, Florida

NEWSBREAK ADAP Advocacy

photos by Holly Clark

The ADAP Advocacy Association (aaa+) is set to honor individuals, companies, government agencies, and organizations who are making a difference in improving access to care and treatment for individuals living with HIV/AIDS via the AIDS Drug Assistance Programs (ADAPs). The 2015 ADAP Leadership Awards, now in their fifth year, reflect the core mission of the D.C.-based national grass-roots organization—ensure resources across the country to eliminate or prevent waiting lists; provide a platform for individuals living with HIV/AIDS to share insights and concerns; and work with others—from advocates and patients to pharmaceutical companies and community-based organizations—to secure and improve access to ADAP. The 2014-2015 honorees include: ADAP Champion of the Year (individual): David Poole, AIDS Healthcare Foundation; ADAP Emerging Leader of the Year (individual): Top: Crystal Ball (HIV Prevention Ball) during Rivkah Meder, AIDS Care Service; ADAP Corporate Partner of the Year: Merck; ADAP AIDS Education Month Community Organization of the Year: Georgia Equality and Philadelphia FIGHT; ADAP Lawmaker of the Year: The Honorable Andrew M. Cuomo, Governor (New York); Left: Tabling at AIDS Education Month ADAP Social Media Campaign of the Year: Josh Robbins, HIV Video Minute; ADAP Grassroots Campaign of the Year: Campaign to End AIDS (C2EA); and ADAP Media Story of the Year: Gabe Johnson, Wall Street Journal, “Disease Outbreaks Reignite Needle- Exchange Debate,” June 19, 2015.

A&U had the chance to learn more about Philadelphia FIGHT, a comprehensive ASO providing primary care, consumer education, advocacy and treatment research, from Jane Shull, the non-profit organization’s executive director.

A&U: What is Philadelphia FIGHT’s approach—the key ingredients, if you will—to engaging and retaining individuals, especially those who may need ADAP services, in care?

Jane Shull: Our approach to engaging and retaining people in care is to make the care accessible, convenient, and respectful.

We serve many people whose experiences with the healthcare system may not have been what they would have hoped, because of stigma, including identification with highly stigmatized groups, e.g., young MSM of color, sex workers, or injection drug users.

We serve a majority of patients who are nonwhite and may have experienced racially based bias. It’s especially important that our patients feel that their needs are respected. So, we have scheduled appointments, but we also have same day sick visits and we allow people to walk in when they need to see a doctor or other provider. Our visits are scheduled for thirty minutes, which we realize is virtually unheard of in the poor people’s healthcare environment, but gives our doctors enough time to really get to know their patients and anticipate their needs. We allow people to speak directly with their provider when they need to.

The needs that low income people have are not limited to the healthcare visit, which is why we help them get access to public benefits, health insurance (Medicaid or ACA plans) and offer a wide range of education programs, including four computer labs with classes in computer literacy. Our signature education program, Project TEACH, has helped thousands of people living with HIV understand treatment issues, and form communities with others living with HIV that enable them to go on and advocate for increased services.

We have a program for people HIV-positive leaving prison or jail, with a new clinic associated with it. We have over 100 young people on PrEP, and that program is offered late into the night to coincide with the time of day that many of the participants want to drop in. There are many other programs here, but without listing them all, the main goal here is: When our participants identify a need, we try to address it if we can.

FIGHT’s John Bell Health Center, Jonathan Lax Treatment Center, and Youth Health Empowerment Project (Y-HEP) seem to cover a lot SEPTEMBER 2015 • A&U

9

WHAT IS PREZCOBIX™ ?

• It is not known if PREZCOBIX™ is safe and effective in children under 18 years of age.

• When used with other antiretroviral medicines to treat HIV-1 infection, PREZCOBIX™ may help:

Medihaler,® Migergot,® Wigraine,® Wigrettes®), methylergonovine (Methergine®), lovastatin or a product that contains lovastatin (Altoprev,® Advicor,® Mevacor ®), lurasidone (Latuda®), oral midazolam (Versed®), pimozide (Orap®), ranolazine (Ranexa®), rifampin (Rifadin,® Rifater,® Rifamate,® Rimactane®), sildenafil (Revatio®) when used for pulmonary arterial hypertension (PAH), simvastatin or a product that contains simvastatin (Simcor,® Vytorin,® Zocor ®), St. John’s Wort (Hypericum perforatum) or a product that contains St. John’s Wort, or triazolam (Halcion®).

○ reduce the amount of HIV-1 in your blood. This is called “viral load.”

• Serious problems can happen if you take any of these medicines with PREZCOBIX.™

○ increase the number of CD4+ (T) cells in your blood that help fight off other infections.

What should I tell my healthcare provider before taking PREZCOBIX™ ?

• PREZCOBIX™ is always taken in combination with other HIV medications for the treatment of HIV-1 infection in adults.

PREZCOBIX™ should be taken once daily with food.

• PREZCOBIX™ does not cure HIV-1 infection or AIDS, and you may still experience illnesses associated with HIV-1 infection.

You must keep taking HIV-1 medicines to control HIV-1 infection and decrease HIV-related illnesses.

• Ask your healthcare provider if you have any questions on how to prevent passing HIV to other people.

• Please read the Important Safety Information below and talk to your healthcare provider to learn if PREZCOBIX™ is right for you.

• About all health problems. Tell your healthcare provider if you have liver problems, including hepatitis B or hepatitis C, have kidney problems, are allergic to sulfa (sulfonamide), have diabetes, have hemophilia, or have any other medical condition, are pregnant, breastfeeding, or plan to become pregnant or breastfeed. Tell your healthcare provider if you become pregnant while taking PREZCOBIX.™ • About all medicines you take. Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. Some medicines interact with PREZCOBIX.™ Keep a list of your medicines to show your healthcare provider and pharmacist. Do not start taking a new medicine without telling your healthcare provider.

Your healthcare provider can tell you if it is safe to take PREZCOBIX™ with other medicines.

IMPORTANT SAFETY INFORMATION

What are the possible side effects of PREZCOBIX™ ?

What is the most important information I should know about PREZCOBIX™ ?

• The most common side effects of darunavir, one of the medicines in PREZCOBIX,™ include diarrhea, nausea, rash, headache, stomach area (abdominal) pain, and vomiting.

• PREZCOBIX™ may cause liver problems. Some people taking PREZCOBIX™ may develop liver problems which may be life-threatening. Your healthcare provider should do blood tests before and during your treatment with PREZCOBIX.™ ○ Chronic hepatitis B or C infection may increase your chance of developing liver problems. Your healthcare provider should check your blood tests more often. ○ Signs and symptoms of liver problems include dark (tea-colored) urine, yellowing of your skin or whites of your eyes, pale-colored stools (bowel movements), nausea, vomiting, pain or tenderness on your right side below your ribs, or loss of appetite. Tell your healthcare provider if you develop any of these symptoms.

• PREZCOBIX™ may cause severe or life-threatening skin reactions or rash. Sometimes these skin reactions and skin rashes can become severe and require treatment in a hospital.

Call your healthcare provider right away if you develop a rash. ○ Stop taking PREZCOBIX™ and call your healthcare provider right away if you develop any skin changes with symptoms such as fever, tiredness, muscle or joint pain, blisters or skin lesions, mouth sores or ulcers, red or inflamed eyes like “pink eye” (conjunctivitis).

• PREZCOBIX,™ when taken with certain other medicines, can cause new or worse kidney problems, including kidney failure.

Your healthcare provider should check your kidneys before you start and while you are taking PREZCOBIX.™ Who should not take PREZCOBIX™ ?

• Do not take PREZCOBIX™ with any of the following medicines: alfuzosin (Uroxatral®), cisapride (Propulsid,® Propulsid® Quicksolv), colchicine (Colcrys,® Mitigare,® if you have liver or kidney problems), dronedarone (Multaq®), dihydroergotamine (D.H.E.45®, Embolex ,® Migranal®), ergotamine tartrate (Cafergot ,® Ergomar ,® Ergostat ,®

• Other possible side effects include: ○ High blood sugar, diabetes or worsening diabetes, and increased bleeding in people with hemophilia have been reported in patients taking protease inhibitor medicines, including PREZCOBIX.™ ○ Changes in body fat can happen in people who take HIV-1 medicines. The exact cause and long-term health effects of these changes are not known. ○ Changes in your immune system (Immune Reconstitution Syndrome) can happen when you start taking HIV medicines.

Your immune system may get stronger and begin to fight infections that have been hidden in your body for a long time.

These are not all of the possible side effects of PREZCOBIX.™ For more information, ask your healthcare provider.

Tell your healthcare provider if you have any side effect that bothers you or that 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.

Please see accompanying full Product Information for more details.

Janssen Therapeutics, Division of Janssen Products, LP © Janssen Therapeutics, Division of Janssen Products, LP 2015 01/15 008417-140113

027409-150108

• PREZCOBIX™ is a prescription HIV-1 (Human Immunodeficiency Virus 1) medicine used with other antiretroviral medicines to treat HIV-1 infection in adults. HIV is the virus that causes AIDS (Acquired Immune Deficiency Syndrome). PREZCOBIX™ contains the prescription medicines PREZISTA® (darunavir) and TYBOST® (cobicistat).

{

Wisdom inspired by real people

B:11.25 in

S:10.25 in

T:10.75 in

DISCOVER YOUR WISDOM WITHIN

Visit PREZCOBIX.com to hear wisdom inspired by experts and people like you living with HIV. Ask your provider if Once-Daily* PREZCOBIX™ is right for you.

PREZCOBIX.com *PREZCOBIX™ is taken in combination with other HIV medications for the treatment of HIV-1 infection in adults.

IMPORTANT PATIENT INFORMATION PATIENT INFORMATION PREZCOBIX (prez-koe-bix) (darunavir and cobicistat) tablets Please read this information before you start taking PREZCOBIX and each time you get a refill. There may be new information. This information does not take the place of talking with your healthcare provider about your medical condition or treatment. What is the most important information I should know about PREZCOBIX? • PREZCOBIX may cause liver problems. Some people taking PREZCOBIX may develop liver problems which may be lifethreatening. Your healthcare provider should do blood tests before and during your treatment with PREZCOBIX. If you have chronic hepatitis B or C infection, your healthcare provider should check your blood tests more often because you have an increased chance of developing liver problems.

Tell your healthcare provider if you have any of the below signs and symptoms of liver problems.

• dark (tea colored) urine • yellowing of your skin or whites of your eyes • pale colored stools (bowel movements) • nausea • vomiting • pain or tenderness on your right side below your ribs • loss of appetite • PREZCOBIX may cause severe or life-threatening skin reactions or rash. Sometimes these skin reactions and skin rashes can become severe and require treatment in a hospital. Call your healthcare provider right away if you develop a rash. Stop taking PREZCOBIX and call your healthcare provider right away if you develop any skin changes with symptoms below: • fever • tiredness • muscle or joint pain • blisters or skin lesions • mouth sores or ulcers • red or inflamed eyes, like “pink eye” (conjunctivitis) • PREZCOBIX when taken with certain other medicines can cause new or worse kidney problems, including kidney failure. Your healthcare provider should check your kidneys before you start and while you are taking PREZCOBIX. See “What are the possible side effects of PREZCOBIX?” for more information about side effects.

What is PREZCOBIX? PREZCOBIX is a prescription HIV-1 (Human Immunodeficiency Virus 1) medicine used with other antiretroviral medicines to treat HIV-1 infection in adults. HIV is the virus that causes AIDS (Acquired Immune Deficiency Syndrome).

PREZCOBIX contains the prescription medicines PREZISTA (darunavir) and TYBOST (cobicistat).

It is not known if PREZCOBIX is safe and effective in children under 18 years of age.

When used with other antiretroviral medicines to treat HIV-1 infection, PREZCOBIX may help: • reduce the amount of HIV-1 in your blood. This is called “viral load”.

• i ncrease the number of CD4+ (T) cells in your blood that help fight off other infections.

Reducing the amount of HIV-1 and increasing the CD4+ (T) cells in your blood may help improve your immune system.

This may reduce your risk of death or getting infections that can happen when your immune system is weak (opportunistic infections).

PREZCOBIX does not cure HIV-1 infection or AIDS. You must keep taking HIV-1 medicines to control HIV-1 infection and decrease HIV-related illnesses.

Avoid doing things that can spread HIV-1 infection to others.

• Do not share or re-use needles or other injection equipment.

• Do not share personal items that can have blood or body fluids on them, like toothbrushes and razor blades.

• Do not have any kind of sex without protection. Always practice safe sex by using a latex or polyurethane condom to lower the chance of sexual contact with semen, vaginal secretions, or blood.

Ask your healthcare provider if you have any questions on how to prevent passing HIV to other people.

Who should not take PREZCOBIX? Do not take PREZCOBIX with any of the following medicines: • alfuzosin (Uroxatral®) • cisapride (Propulside®, Propulsid® Quicksolv) • colchicine (Colcrys®, Mitigare®), if you have liver or kidney problems • dronedarone (Multaq®) • ergot-containing medicines: • dihydroergotamine (D.H.E. 45®, Embolex®, Migranal®) • ergotamine tartrate (Cafergot®, Ergomar®, Ergostat®, Medihaler®, Migergot®, Wigraine®, Wigrettes®) • methylergonovine (Methergine®) • lovastatin or a product that contains lovastatin (Altoprev®, Advicor®, Mevacor®) • lurasidone (Latuda®) • midazolam (Versed®), when taken by mouth • pimozide (Orap®) • ranolazine (Ranexa®) • rifampin (Rifadin®, Rifater®, Rifamate®, Rimactane®) • sildenafil (Revatio®), when used for the treatment of pulmonary arterial hypertension (PAH) • simvastatin or a product that contains simvastatin (Simcor®, Vytorin®, Zocor®) • St. John’s Wort (Hypericum perforatum), or a product that contains St. John’s Wort • triazolam (Halcion®) Serious problems can happen if you take any of these medicines with PREZCOBIX. What should I tell my healthcare provider before taking PREZCOBIX? Before taking PREZCOBIX, tell your healthcare provider if you: • have liver problems, including hepatitis B or hepatitis C • have kidney problems • are allergic to sulfa (sulfonamide) • have diabetes • have hemophilia • have any other medical condition

IMPORTANT PATIENT INFORMATION • a re pregnant or plan to become pregnant. It is not known if PREZCOBIX will harm your unborn baby. Tell your healthcare provider if you become pregnant while taking PREZCOBIX. • Pregnancy Registry: There is a pregnancy registry for women who take antiretroviral medicines during pregnancy. The purpose of the registry is to collect information about the health of you and your baby. Talk to your healthcare provider about how you can take part in this registry.

• are breastfeeding or plan to breastfeed. Do not breastfeed if you take PREZCOBIX. • You should not breastfeed if you have HIV-1 because of the risk of passing HIV to your baby.

• It is not known if PREZCOBIX can pass into your breast milk.

• Talk to your healthcare provider about the best way to feed your baby.

Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. Some medicines interact with PREZCOBIX. Keep a list of your medicines to show your healthcare provider and pharmacist.

• You can ask your healthcare provider or pharmacist for a list of medicines that interact with PREZCOBIX. • Do not start taking a new medicine without telling your healthcare provider. Your healthcare provider can tell you if it is safe to take PREZCOBIX with other medicines.

How should I take PREZCOBIX? • Take PREZCOBIX exactly as your healthcare provider tells you.

• Do not change your dose or stop taking PREZCOBIX without talking to your healthcare provider.

• Take PREZCOBIX 1 time a day with food.

• If you miss a dose of PREZCOBIX by less than 12 hours, take your missed dose of PREZCOBIX right away. Then take your next dose of PREZCOBIX at your regularly scheduled time.

• If you miss a dose of PREZCOBIX by more than 12 hours, wait and then take the next dose of PREZCOBIX at your regularly scheduled time.

• If a dose of PREZCOBIX is skipped, do not double the next dose. Do not take more or less than your prescribed dose of PREZCOBIX at any one time.

• If you take too much PREZCOBIX, call your healthcare provider or go to the nearest hospital emergency room right away.

What are the possible side effects of PREZCOBIX? PREZCOBIX may cause serious side effects including: • See “What is the most important information I should know about PREZCOBIX?” • Diabetes and high blood sugar (hyperglycemia). Some people who take protease inhibitors including PREZCOBIX can get high blood sugar, develop diabetes, or your diabetes can get worse. Tell your healthcare provider if you notice an increase in thirst or urinate often while taking PREZCOBIX. • Changes in body fat can happen in people who take HIV-1 medications. The changes may include an increased amount of fat in the upper back and neck (“buffalo hump”), breast, and around the middle of your body (trunk). Loss of fat from the legs, arms, and face may also happen.

The exact cause and long-term health effects of these conditions are not known.

• Changes in your immune system (Immune Reconstitution Syndrome) can happen when you start taking HIV-1 medicines. Your immune system may get stronger and begin to fight infections that have been hidden in your body for a long time. Tell your healthcare provider right away if you start having new symptoms after starting your HIV-1 medicine.

• Increased bleeding for hemophiliacs. Some people with hemophilia have increased bleeding with protease inhibitors including PREZCOBIX. The most common side effects of darunavir, one of the medicines in PREZCOBIX, include: • diarrhea • nausea • rash • headache • stomach area (abdominal) pain • vomiting Tell your healthcare provider if you have any side effect that bothers you or that does not go away.

These are not all of the possible side effects of PREZCOBIX. For more information, ask your health care provider.

Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.

How should I store PREZCOBIX? • Store PREZCOBIX tablets at room temperature between 68°F to 77°F (20°C to 25°C).

Keep PREZCOBIX and all medicines out of reach of children.

General information about PREZCOBIX Medicines are sometimes prescribed for purposes other than those listed in a Patient Information leaflet. Do not use PREZCOBIX for a condition for which it was not prescribed.

Do not give PREZCOBIX to other people, even if they have the same symptoms that you have. It may harm them.

If you would like more information, talk with your healthcare provider. You can ask your healthcare provider or pharmacist for information about PREZCOBIX that is written for health professionals.

For more information call 1-800-526-7736.

What are the ingredients in PREZCOBIX? Active ingredients: darunavir and cobicistat Inactive ingredients: colloidal silicon dioxide, crospovidone, hypromellose, magnesium stearate, and silicified microcrystalline cellulose. The tablets are film-coated with a coating material containing iron oxide black, iron oxide red, polyethylene glycol, polyvinyl alcohol (partially hydrolyzed), talc, and titanium dioxide.

Manufactured by: Janssen Ortho LLC, Gurabo, PR 00778 Manufactured for: Janssen Therapeutics, Division of Janssen Products, LP, Titusville NJ 08560 Issued: January 2015 © Janssen Pharmaceuticals, Inc. 2015 027415-150108

NewsBreak

of bases, including, respectively, primary healthcare services for those who are formerly incarcerated, for those whose cultural backgrounds may make access harder, and youth ages thirteen to twenty-four, but are there other community members you’d like to engage more or services you would like to see expanded?

We would like to be able to offer more programs outside of Center City, Philadelphia; we have a Spanish-speaking clinic now in North Philadelphia in the heart of the area where people who would prefer to speak Spanish are most likely to live, and we would like to be able to do more of this.

Secondly, there is too much pressure on the Federal service budgets now to allow us (or anybody else) to offer the range of HIV education services we would like to be able to see in the community. We could be offering TEACH classes all over our area if we had the resources to do so.

What does it mean for your organization to be recognized for its leadership?

We are honored to be recognized by the ADAP advocacy coalition. When you work locally you don’t expect that national organizations will notice the work, so it is very encouraging when they do.

Youth Health Empowerment Project (Y-HEP) dodgeball game with Wade Davis (in red cap)

Philadelphia FIGHT and other honorees will be in attendance when the 5th Annual ADAP Leadership Awards Dinner takes place on September 26 during aaa+’s 8th Annual Conference in Washington, D.C. For more information about the ADAP Advocacy Association, contact Brandon M. Macsata at info@adapadvocacyassociation.org. For more information about Philadelphia FIGHT, visit www.fight.org.

The countdown for the United States Conference on AIDS 2015 (USCA) is on. Convening this year in Washington, D.C., at host hotel the Marriott Marquis, the event will take place September 10 through 13. Kicking off the conference on Wednesday, September 9th, the Black AIDS Institute is sponsoring the first National Black PrEP Summit, “Black Lives Matter: What’s PrEP got to do with it?”

Echoing USCA 2015’s theme of “ending the disparities,” this meeting will bring together leaders in the field and advocates across the country to discuss best practices and strategies to increase access and appropriate utilization of PrEP in Black communities. “We are at a strategic point in the trajectory of the HIV/AIDS epidemic in our community,” notes Phill Wilson [A&U, February 2014, President and CEO of the Black AIDS Institute [see also this month’s Survival Guide]. “How we use PrEP and other biomedical tools and who has access to them will determine if we are able to reduce the racial health disparities or exacerbate them.”

A steadfast leader in matters affecting the conference’s targeted mission of ending racial disparities in the fight against HIV, Wilson urges, “New biomedical interventions, including pre-exposure prophylaxis, offer hope of the possibility of ending the AIDS epidemic in the United States. The White House recently released a revised National HIV/AIDS Strategy. The three tenets of the strategy are ‘The Right People,’ ‘The Right Places,’ and ‘The Right Practices.’ The facts are: Black Americans bear the brunt of the HIV/AIDS epidemic in the U.S. We are the right people. Black Americans are not adapting PrEP and other biomedical interventions at the rate as other racial/ ethnic communities or nearly the rate we need to impact the epidemic in our communities. There is low awareness and understanding of PrEP in Black communities.”

For more information about Black AIDS Institute, visit www.blackaids.org.

When Dogs Heal Judging from social media posts, click-throughs, and shares, videos and stories of the heroics of dogs are wildly popular—and with good reason! Who doesn’t like to be reminded of the beauty and strength of dogs as they drag other dogs off of highways, rescue cats from fires, make friends with a deer or a dolphin, and pine after their human companions when they leave for the day?

The bond between a dog and his or her human is at the core of Fred Says, a charity that supports the health and well-being of youth who are living with HIV/AIDS and that pays tribute to physician Rob Garofalo, its founder, and his dog Fred. Adopted shortly after Dr. Garofalo survived cancer and then was diagnosed with HIV, Fred proved his mettle by helping Rob soldier through one of the doctor’s most difficult periods of his life.

Fred Says was founded by Dr. Garofalo, who has dedicated his career to the care of young individuals living with HIV. Last year, the non-profit distributed over $50,000 to organizations working with HIV-positive youth on World AIDS Day. The story that Dr. Garofalo tells about his furry friend is not uncommon, and Fred Says decided to celebrate other stories of when dogs heal.

When Dogs Heal, a photographic and essay-driven project, offers stories of the therapeutic bond between dogs and their humans. So far the project has interviewed and photographed at least five to ten people across four U.S. cities, including Los Angeles, San Francisco, Chicago, and Atlanta. The project will debut in gallery shows in Chicago, San Francisco, and New York City, consecutively, to coincide with World AIDS Day on December 1. The healing words and pictures will be compiled into a book, whose proceeds will benefit youth affected by HIV/AIDS. For more information, log on to: www.fredsays.org.

14

A&U • SEPTEMBER 2015

photo of Dr. Rob Garofalo by Ed Negron; dodgeball photo by Holly Clark

National Black PrEP Summit

AUGUST 2015 • A&U

15

16

Trapp at her Trapp Family Lodge in Vermont when I was a teen. What a thrill!

I have her signed photo framed right here by my desktop. Ronn met Ms. Trapp, as well, when she spoke at his alma mater, Otterbein College, where he received his bachelor’s in sociology.

After speaking at a breakfast seminar at Caracole, an organization that provides affordable housing to HIV and AIDS clients, Dr. Rucker and I sit on his three-acre backyard, marveling at the exquisite summer day.

Ruby Comer: [As I settle into my contour lounger, I roar] What’s up, Doc?!

Oh, geez, did I just say that?! [I bow my head and toss it back and forth.] It’s so lovely to be with you, Ronn. How did you come by two n’s in your name?

Ronn Rucker: Hated being called Ronnie.

How many friends have you lost to this terrible disease?

Early on, my address book of friends emptied every year and as new friends were added they then joined the dead ones in large numbers. I stopped counting after fifteen.

Tell me about the anonymous HIV testing site.

Back then, people feared job loss and other forms of discrimination. So Michael [Richey] and I decided we should offer an anonymous test. We set out holding a clinic in the evening where no names

were taken and people received a number, which was associated with their blood test.

It took a week until the results could be determined. People with original positives then had a second test on the same specimen to determine if it was specifically HIV. It was a horrible long week.

Alas, I recall those days all too well. What did you specifically do?

It was my job to explain the process to the men and then give them their results. People began coming in huge numbers and those were days when I told seven or more people they were positive and then watched them dissolve in front of me. It was a death sentence. A little of me dissolved with each one and I became very depressed.

I continued working with the men A&U • SEPTEMBER 2015

Ruby illustration by Davidd Batalon; photo courtesy R. Rucker

R

onn Rucker raised a ruckus! This man started the first HIV anonymous test site in the world...in the world!

His name is Dr. Ronn Rucker, PhD. And once you encounter this likable chap, you won’t likely forget him.

I’m proud to call him a fellow Buckeye, a native son of Ohio! Ronn, a clinical sociologist, along with Dr. Evelyn Hess and Michael Richey, in collaboration with the Centers for Disease Control and Prevention, set up the first test site in Cincinnati in January 1985. It became the model for other sites worldwide.

At the time, Dr. Rucker was a Psychiatric Case Manager with the Cincinnati Health Department (CHD).

Ronn attended the first national meeting on AIDS that was held in New York City. Since then he has participated in many International AIDS Conferences. He also began a Buddy Program (volunteers matched with PWAs) that became AIDS Volunteer of Cincinnati. Ronn designed an HIV testing model for GM in Detroit and was even a consultant to the Ministry of Health in the Old Soviet Union.

Dr. Rucker was a thirty-six-year veteran of the department when he retired in 2005. For his work, the Cincinnati mayor proclaimed October 10 as “Ronn Rucker Day.” Today he’s in private practice, working primarily on substance abuse issues with adolescents who are referred to him by schools and the courts. He also is an educator and a lecturer.

Ron is still a resident of “Cincy”—as us Ohio folk refer to the Queen City—with his life partners Ruth and Les (fourteen years together with Les), six Borzoi, aka Russian Wolf Hounds, and a cat. Ronn also has two sons and five grandchildren.

Ronn and I share another bond: a committed fan of The Sound of Music—like me, his fave film! I met the real Maria von

RONN RUCKER

The longest consecutive running musical AIDS benefit in the country!

[I scoot my chair more under the shade of the bamboo and white pine trees. No sun for this flawless lily-white face!] Looking back from today, what’s your opinion of the epidemic?

18

Changes came after Rock Hudson’s death. Now, HIV/AIDS seems forgotten and hidden under a blanket. A new group of young people is getting infected, but at least now it’s not a death sentence.

What revs you to lend a hand?

I feel it’s important for me to try and change the world. Quakers and Mahatma Gandhi were my greatest influences.

Oh! And tell me about that photograph of you leaning over James Dean’s tombstone on your Facebook page.

James Dean meant a lot to me as a person who emerged for just a moment in time and became a lasting influence on acting. He’s special to me in many ways.

Do you have any other heroes in the entertainment field?

[He responds instantly.] Joshua Bell and Joan Baez. I’ve met both of them. I gave Joan an amber necklace from Russia and she wore it at a performance. I have a miniature violin Joshua signed for me.

How touching, Ronn. How in the world did it come about that you became a consultant to the USSR Ministry of Health?

I had attended numerous International AIDS Conferences to present papers about HIV testing and later on training health workers to work with AIDS patients. So, I was meeting people from all over the world and then I was asked to be part of a Presidential Delegation. Bush, the first, whom I

did not support, appointed me. There were about fifteen of us who were leading figures in our various disciplines: health, science, government, NASA, education, and more.

It turned out that we arrived in Moscow just when Russia was being turned upside down politically. I met many top-level people and this included people who later asked me to return to train their healthcare people about AIDS. I went over about twelve times in two years and I found it immensely wonderful.

I loved Russian culture and art. I loved the Moscow flea market and started taking Barbie Dolls to the people who could not get them.

I would trade these for Matryoshka, lacquer boxes, amber, and military memorabilia.

I’m dying to visit Russia, but with “Dictator” Putin, I think I’ll wait until he’s out of office. [Suddenly I shout.] Ronn Rucker, you are a role model! Whom do you consider a hero in the AIDS epidemic?

Thank you, Ruby. Cleve Jones [A&U, October 2008] is a hero—and my friend.

The AIDS Quilt accomplished miracles and it grew and grew. He and I worked as volunteers on the very first March on Washington for LGBT rights, which included organizing meetings all over the USA. [He pauses.] The film Milk truly captured Cleve’s spirit.

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 2015

photo courtesy R. Rucker

because I cared so much about them.

They sensed this.

Compassion indeed permeates your aura.

You counseled many patients with AIDS. Does one particular client call to mind?

Jamie was my “Buddy.” He had been a dedicated Special Ed high school teacher and was involved in a long-term relationship. The media was begging to talk with an AIDS patient and USA Today, Cincinnati Magazine, The Sally Jesse Raphael Show, and others approached Jamie. He agreed to be the AIDS Volunteer of Cincinnati public representative. Jamie was eloquent when talking about his illness and wanted me present with him when he went on these media calls.

Sally Jesse Raphael [A&U, March 2000], whose show was one of the first national TV shows to have an HIV/AIDS guest, invited Jamie on her show. She hosted us in luxury and we had a great time. Jamie and I became very close. I visited his home twice a week as his “buddy.”

I was with him when he died at Hospice of Cincinnati. His lover had just left the room for a short break. I still remember the nurse holding my hand and saying, “He’s dying”—as he took his last breath.

It was awful.... [Ronn pauses, glancing out at the calming Ohio River.]

poetry

The Challenge of Adherence

Though it lacks the deliberateness of fire setting the bridges or boats once one’s passed into strange lands or foe’s territory— dark Rubicon crossed over on horseback, fighting what’s dead ahead with the river behind—what a noise over one’s shoulder of timbers cracking and resin popping while all your last chances go up in smoke; this instead’s blue field sky work, marveling at the topsides of clouds blushed in sunlight, air flight without a thought for what’s needed: using fuel instead to just go farther —forgetting again the pill’s appointed hour—and passing the point of no return.

—Noah Stetzer Noah Stetzer is a graduate of The MFA Program for Writers at Warren Wilson College and also a scholarship recipient from the Lambda Literary Retreat for Emerging LGBT Writers and from the Bread Loaf Writer’s Conference. Noah lives in the Washington, D.C., area.

19

A&U • SEPTEMBER 2015

COMPLERA is a prescription medicine for adults who have never taken HIV-1 medicines before and who have no more than 100,000 copies/mL of virus in their blood. COMPLERA can also replace current HIV-1 medicines for some adults who have an undetectable viral load (less than 50 copies/mL) and whose healthcare provider determines that they meet certain other requirements. COMPLERA combines 3 medicines into 1 pill to be taken once a day with food. COMPLERA should not be used with other HIV-1 medicines.

Just the

one

for me

COMPLERA is a complete HIV-1 treatment that combines the medicines in TRUVADA + EDURANT in only 1 pill a day.*

Ask your healthcare provider if COMPLERA may be the one for you. *COMPLERA is a combination of the medicines in TRUVADA (emtricitabine and tenofovir disoproxil fumarate) and EDURANT (rilpivirine).

Pill shown is not actual size.

COMPLERA does not cure HIV-1 infection or AIDS.

To control HIV-1 infection and decrease HIV-related illnesses you must keep taking COMPLERA. 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.

It is not known if COMPLERA is safe and effective in children under 18 years old.

IMPORTANT SAFETY INFORMATION What is the most important information I should know about COMPLERA?

COMPLERA can cause serious side effects: • Build-up of an acid in your blood (lactic acidosis), which is a serious medical emergency. Symptoms of lactic acidosis include feeling very weak or tired, unusual (not normal) muscle pain, trouble breathing, stomach pain with nausea or vomiting, feeling cold especially in your arms and legs, feeling dizzy or lightheaded, and/or a fast or irregular heartbeat.

• Serious liver problems. The liver may become large (hepatomegaly) and fatty (steatosis). Symptoms of liver problems include your skin or the white part of your eyes turns yellow (jaundice), dark “tea-colored” urine, light-colored bowel movements (stools), loss of appetite for several days or longer, nausea, and/or stomach pain.

• You may be more likely to get lactic acidosis or serious liver problems if you are female, very overweight (obese), or have been taking COMPLERA for a long time. In some cases, these serious conditions have led to death. Call your healthcare provider right away if you have any symptoms of these conditions.

• Worsening of hepatitis B (HBV) infection. If you also have HBV and stop taking COMPLERA, your hepatitis may suddenly get worse. Do not stop taking COMPLERA without first talking to your healthcare provider, as they will need to monitor your health. COMPLERA is not approved for the treatment of HBV.

Who should not take COMPLERA?

Do not take COMPLERA if you: • Take a medicine that contains: adefovir (Hepsera), lamivudine (Epivir-HBV), carbamazepine (Carbatrol, Equetro, Tegretol, TegretolXR, Teril, Epitol), oxcarbazepine (Trileptal), phenobarbital (Luminal), phenytoin (Dilantin, Dilantin-125, Phenytek), rifampin (Rifater, Rifamate, Rimactane, Rifadin), rifapentine (Priftin), dexlansoprazole (Dexilant), esomeprazole (Nexium, Vimovo), lansoprazole (Prevacid), omeprazole (Prilosec, Zegerid), pantoprazole sodium (Protonix), rabeprazole (Aciphex), more than 1 dose of the steroid medicine dexamethasone or dexamethasone sodium phosphate, or the herbal supplement St. John’s wort.

• Take any other medicines to treat HIV-1 infection, unless recommended by your healthcare provider.

What are the other possible side effects of COMPLERA?

Serious side effects of COMPLERA may also include: • Severe skin rash and allergic reactions. Call your doctor right away if you get a rash. Some rashes and allergic reactions may need to be treated in a hospital. Stop taking COMPLERA and get medical help right away if you get a rash with any of the following symptoms: severe allergic reactions causing a swollen face, lips, mouth, tongue or throat which may lead to difficulty swallowing or breathing; mouth sores or blisters on your body; inflamed eye (conjunctivitis); fever, dark urine or pain on the right side of the stomach-area (abdominal pain).

• New or worse kidney problems, including kidney failure. Your healthcare provider should do blood tests to check your kidneys before starting treatment with COMPLERA. If you have had kidney problems, or take other medicines that may cause kidney problems, your healthcare provider may also check your kidneys during treatment with COMPLERA.

Depression or mood changes. Tell your healthcare provider right away if you have any of the following symptoms: feeling sad or hopeless, feeling 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 had changes in their liver function tests in the past may have an increased risk for liver problems while taking COMPLERA. Some people without prior liver disease may also be at risk. Your healthcare provider may do tests to check your liver enzymes before and during treatment with COMPLERA. • Bone problems, including bone pain or bones getting soft or thin, which may lead to fractures. Your healthcare provider may do tests to check your bones.

• Changes in body fat can happen in people taking HIV-1 medicines.

• 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 COMPLERA. •

The most common side effects of COMPLERA include trouble sleeping (insomnia), abnormal dreams, headache, dizziness, diarrhea, nausea, rash, tiredness, and depression. Other common side effects include vomiting, stomach pain or discomfort, skin discoloration (small spots or freckles), and pain. 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 COMPLERA?

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

• All the medicines you take, including prescription and nonprescription medicines, vitamins, and herbal supplements.

COMPLERA may affect the way other medicines work, and other medicines may affect how COMPLERA works. Keep a list of all your medicines and show it to your healthcare provider and pharmacist.

Do not start any new medicines while taking COMPLERA without first talking with your healthcare provider.

• If you take rifabutin (Mycobutin). Talk to your healthcare provider about the right amount of rilpivirine (Edurant) you should take.

• If you take antacids. Take antacids at least 2 hours before or at least 4 hours after you take COMPLERA. • If you take stomach acid blockers. Take acid blockers at least 12 hours before or at least 4 hours after you take COMPLERA. Ask your healthcare provider if your acid blocker is okay to take, as some acid blockers should never be taken with COMPLERA. • If you are pregnant or plan to become pregnant. It is not known if COMPLERA can harm your unborn baby. Tell your healthcare provider if you become pregnant while taking COMPLERA. • If you are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed. HIV-1 can be passed to the baby in breast milk. Also, some medicines in COMPLERA can pass into breast milk, and it is not known if this can harm the baby.

•

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 Brief Summary of full Prescribing Information with important warnings on the following pages.

Brief Summary of full Prescribing Information COMPLERA® (kom-PLEH-rah) (emtricitabine 200 mg, rilpivirine 25 mg, tenofovir disoproxil fumarate 300 mg) tablets Brief summary of full Prescribing Information. For more information, please see the full Prescribing Information, including Patient Information.

What is COMPLERA? • COMPLERA is a prescription medicine used as a complete HIV-1 treatment in one pill a day. COMPLERA is for adults who have never taken HIV-1 medicines before and who have no more than 100,000 copies/mL of virus in their blood (this is called ‘viral load’). Complera can also replace current HIV-1 medicines for some adults who have an undetectable viral load (less than 50 copies/mL) and whose healthcare provider determines that they meet certain other requirements.

• COMPLERA is a complete HIV-1 medicine and should not be used with any other HIV-1 medicines.

• COMPLERA should always be taken with food. A protein drink does not replace food.

• COMPLERA does not cure HIV-1 or AIDS. You must stay on continuous HIV-1 therapy to control HIV-1 infection and decrease HIV-related illnesses.

• Ask your healthcare provider about how to prevent passing HIV-1 to others. Do not share or reuse needles, injection equipment, or personal items that can have blood or body fluids on them. Do not have sex without protection. Always practice safer sex by using a latex or polyurethane condom to lower the chance of sexual contact with semen, vaginal secretions, or blood.

What is the most important information I should know about COMPLERA? COMPLERA can cause serious side effects, including: • Build-up of an acid in your blood (lactic acidosis). Lactic acidosis can happen in some people who take COMPLERA or similar (nucleoside analogs) medicines. Lactic acidosis is a serious medical emergency that can lead to death. Lactic acidosis can be hard to identify early, because the symptoms could seem like symptoms of other health problems. Call your healthcare provider right away if you get any of the following symptoms which could be signs of lactic acidosis: – feel very weak or tired – have unusual (not normal) muscle pain – have trouble breathing – having stomach pain with nausea or vomiting – feel cold, especially in your arms and legs – feel dizzy or lightheaded – have a fast or irregular heartbeat • Severe liver problems. Severe liver problems can happen in people who take COMPLERA. In some cases, these liver problems can lead to death. Your liver may become large (hepatomegaly) and you may develop fat in your liver (steatosis). Call your healthcare provider right away if you get any of the following symptoms of liver problems: – your skin or the white part of your eyes turns yellow (jaundice) – dark “tea-colored” urine – light-colored bowel movements (stools) – loss of appetite for several days or longer – nausea – stomach pain • You may be more likely to get lactic acidosis or severe liver problems if you are female, very overweight (obese), or have been taking COMPLERA for a long time.

• Worsening of Hepatitis B infection. If you have hepatitis B virus (HBV) infection and take COMPLERA, your HBV may get worse (flare-up) if you stop taking COMPLERA. A “flare-up” is when your HBV infection suddenly returns in a worse way than before. COMPLERA is not approved for the treatment of HBV, so you must discuss your HBV with your healthcare provider.

– Do not run out of COMPLERA. Refill your prescription or talk to your healthcare provider before your COMPLERA is all gone.

– Do not stop taking COMPLERA without first talking to your healthcare provider.

– If you stop taking COMPLERA, your healthcare provider will need to check your health often and do blood tests regularly to check your HBV infection. Tell your healthcare provider about any new or unusual symptoms you may have after you stop taking COMPLERA. Who should not take COMPLERA? Do not take COMPLERA if you also take any of the following medicines: • Medicines used for seizures: carbamazepine (Carbatrol, Equetro, Tegretol, Tegretol-XR, Teril, Epitol); oxcarbazepine (Trileptal); phenobarbital (Luminal); phenytoin (Dilantin, Dilantin-125, Phenytek) • Medicines used for tuberculosis: rifampin (Rifater, Rifamate, Rimactane, Rifadin); rifapentine (Priftin) • Certain medicines used to block stomach acid called proton pump inhibitors (PPIs): dexlansoprazole (Dexilant); esomeprazole (Nexium, Vimovo); lansoprazole (Prevacid); omeprazole (Prilosec, Zegerid); pantoprazole sodium (Protonix); rabeprazole (Aciphex) • Certain steroid medicines: More than 1 dose of dexamethasone or dexamethasone sodium phosphate • Certain herbal supplements: St. John’s wort • Certain hepatitis medicines: adefovir (Hepsera), lamivudine (Epivir-HBV) Do not take COMPLERA if you also take any other HIV-1 medicines, including: • Other medicines that contain emtricitabine or tenofovir (ATRIPLA, EMTRIVA, STRIBILD, TRUVADA, VIREAD) • Other medicines that contain lamivudine (Combivir, Epivir, Epzicom, Triumeq, Trizivir) • rilpivirine (Edurant), unless you are also taking rifabutin (Mycobutin) COMPLERA is not for use in people who are less than 18 years old.

What are the possible side effects of COMPLERA? COMPLERA may cause the following serious side effects: • See “What is the most important information I should know about COMPLERA?” • Severe skin rash and allergic reactions. Skin rash is a common side effect of COMPLERA but it can also be serious. Call your doctor right away if you get a rash. In some cases, rash and allergic reaction may need to be treated in a hospital. Stop taking COMPLERA and call your doctor or get medical help right away if you get a rash with any of the following symptoms: – severe allergic reactions causing a swollen face, lips, mouth, tongue or throat, which may cause difficulty swallowing or breathing – mouth sores or blisters on your body – inflamed eye (conjunctivitis) – fever, dark urine or pain on the right side of the stomach-area (abdominal pain) • New or worse kidney problems, including kidney failure. Your healthcare provider should do blood and urine tests to check your kidneys before you start and while you are taking COMPLERA. If you have had kidney problems in the past or need to take another medicine that can cause kidney problems, your healthcare provider may need to do blood tests to check your kidneys during your treatment with COMPLERA.

• Depression or mood changes. Tell your healthcare provider right away if you have any of the following symptoms: – feeling sad or hopeless – feeling anxious or restless – have thoughts of hurting yourself (suicide) or have tried to hurt yourself • Change in liver enzymes. People with a history of hepatitis B or C virus infection or who have certain liver enzyme changes may have an increased risk of developing new or worsening liver problems during treatment with COMPLERA. Liver problems can also happen during treatment with COMPLERA in people without a history of liver disease.

Your healthcare provider may need to do tests to check your liver enzymes before and during treatment with COMPLERA. • Bone problems can happen in some people who take COMPLERA. Bone problems include bone pain, softening or thinning (which may lead to fractures). Your healthcare provider may need to do tests to check your bones.

• Changes in body fat can happen in people taking HIV-1 medicine.

These changes may include increased amount of fat in the upper back and neck (“buffalo hump”), breast, and around the main part of your body (trunk). Loss of fat from the legs, arms and face may also happen.

The cause and long term health effect of these conditions are not known.

• Changes in your immune system (Immune Reconstitution Syndrome) can happen when you start taking HIV-1 medicines. Your immune system may get stronger and begin to fight infections that have been hidden in your body for a long time. Tell your healthcare provider if you start having any new symptoms after starting your HIV-1 medicine.

The most common side effects of COMPLERA include: • Trouble sleeping (insomnia), abnormal dreams, headache, dizziness, diarrhea, nausea, rash, tiredness, depression Additional common side effects include: • Vomiting, stomach pain or discomfort, skin discoloration (small spots or freckles), pain Tell your healthcare provider if you have any side effect that bothers you or that does not go away.

• These are not all the possible side effects of COMPLERA. For more information, ask your healthcare provider.

• Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.

What should I tell my healthcare provider before taking COMPLERA? Tell your healthcare provider about all your medical conditions, including: • If you have or had any kidney, mental health, bone, or liver problems, including hepatitis B or C infection.

• If you are pregnant or plan to become pregnant. It is not known if COMPLERA can harm your unborn child.

– There is a pregnancy registry for women who take antiviral medicines during pregnancy. The purpose of this registry is to collect information about the health of you and your baby. Talk to your healthcare provider about how you can take part in this registry.

• If you are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed if you take COMPLERA. – You should not breastfeed if you have HIV-1 because of the risk of passing HIV-1 to your baby.

– Two of the medicines in COMPLERA can pass to your baby in your breast milk. It is not known if this could harm your baby.

– Talk to your healthcare provider about the best way to feed your baby.

Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements: • COMPLERA may affect the way other medicines work, and other medicines may affect how COMPLERA works.

• If you take certain medicines with COMPLERA, the amount of COMPLERA in your body may be too low and it may not work to help control your HIV-1 infection. The HIV-1 virus in your body may become resistant to COMPLERA or other HIV-1 medicines that are like it.

• Be sure to tell your healthcare provider if you take any of the following medicines: – Rifabutin (Mycobutin), a medicine to treat some bacterial infections.

Talk to your healthcare provider about the right amount of rilpivirine (Edurant) you should take.

– Antacid medicines that contain aluminum, magnesium hydroxide, or calcium carbonate. Take antacids at least 2 hours before or at least 4 hours after you take COMPLERA. – Certain medicines to block the acid in your stomach, including cimetidine (Tagamet), famotidine (Pepcid), nizatidine (Axid), or ranitidine hydrochloride (Zantac). Take the acid blocker at least 12 hours before or at least 4 hours after you take COMPLERA. Some acid blocking medicines should never be taken with COMPLERA (see “Who should not take COMPLERA?” for a list of these medicines).

– Medicines that can affect how your kidneys work, including acyclovir (Zovirax), cidofovir (Vistide), ganciclovir (Cytovene IV, Vitrasert), valacyclovir (Valtrex), and valganciclovir (Valcyte).

– clarithromycin (Biaxin) – erythromycin (E-Mycin, Eryc, Ery-Tab, PCE, Pediazole, Ilosone) – fluconazole (Diflucan) – itraconazole (Sporanox) – ketoconazole (Nizoral) – methadone (Dolophine) – posaconazole (Noxafil) – telithromycin (Ketek) – voriconazole (Vfend) Know the medicines you take. Keep a list of all your medicines and show it to your healthcare provider and pharmacist when you get a new medicine. Do not start any new medicines while you are taking COMPLERA without first talking with your healthcare provider.

Keep COMPLERA and all medicines out of reach of children.

This Brief Summary summarizes the most important information about COMPLERA. If you would like more information, talk with your healthcare provider. You can also ask your healthcare provider or pharmacist for information about COMPLERA that is written for health professionals, or call 1-800-445-3235 or go to www.COMPLERA.com.

Revised: May 2015

COMPLERA, the COMPLERA Logo, EMTRIVA, GILEAD, the GILEAD Logo, GSI, HEPSERA, STRIBILD, TRUVADA, VIREAD, and VISTIDE are trademarks of Gilead Sciences, Inc., or its related companies. ATRIPLA is a trademark of Bristol-Myers Squibb & Gilead Sciences, LLC. All other marks referenced herein are the property of their respective owners.

©2015 Gilead Sciences, Inc. All rights reserved. CPAC0167 06/15

A Small-Framed Man spread the gift of hope—in all capital letters!

W

hat do you do, when you’ve done all that you can do? Pastor Donald McClurkin says, “Stand.”

Oftentimes, it seems as if life is dealing us a hand of cards that is meant to be lost. Nevertheless, you must always keep your poker face straight with a mind to convince your opponent that you have a winning hand. And, also, you must take Kenny Rogers’ advice and know when to hold ‘em and when to fold ‘em.

Recently, I had the privilege to meet and encourage a young man who had given up on life. After hearing my testimony, this young man, who has been suffering from the effects of AIDS and by his own powerless hands that left him with no will to live, decided to fight back and strive to live life to the fullest. I must humbly say that this is a great honor and privilege to be a part of these events in a man’s life. To stand and tell someone you completely understand what they are going through because you too have HIV creates an atmosphere of HOPE. Especially, when the person you are encouraging is suffering alone and has no support, mainly because they don’t have the courage to tell loved ones their HIV status.

For me, telling someone my HIV status and knowing it brings them hope is not a total loss; without boasting, I must say, it gives me hope that one day we can live in a generation that is free from AIDS. This small-framed man, who smiled through the struggle and laughed through the pain, enriched my life to do what it takes for me to live an unselfish life. This world has enough selfish people but not enough selfless people that go about spreading the gift of hope. The one thing that every individual on the face of this earth needs just as much as they need air and water is HOPE! Hope uplifts and edifies a person to the point of victory, beating defeat with the driving force that is dedicated to beating all the odds.

Well, my heart is hurting right now, as I am sitting here writing this article because this young man who decided to fight to live, withered away in a matter of days, to skinny bones and several weeks later, he was gone. This past week, after months of fighting to survive AIDS, he was overcome

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by another vicious disease—cancer. So, again I ask, what do you do, when you’ve done all that you can do? It’s easy to tell someone to “stand” but truth be told it’s easier said than done.

My advice is that you must have something or someone to believe in. For me, my faith in Jesus Christ offers me that hope.

So, I encourage everyone to find something or someone to believe in that gives them that gift of HOPE that everyone desperately desires and needs.

Next, I encourage you to acknowledge your pain. It is ok to hurt, to cry, and to be disappointed, scared and even ashamed.

After all, you are only human and these feelings come along with the human life.

Third of all, seek support. If you are unable to manage your feelings and your thoughts than find a place where you can obtain the support that you need. In many states, people living with HIV/AIDS have the option to talk with a counselor and to get into a peer support group that shares in your pain. Why, because they are your peer.

Remember, somewhere down the road they had to face head-on the same grief that you are facing now. You are not alone!

Last of all, get motivated to HOPE! Hope to survive. Hope to win. Hope to be successful. Even, hope to overcome HIV/ AIDS. In the words of President Obama, “Yes, We Can!” Yes, you can live a long

meaningful and successful life with HIV/ AIDS and, yes, you do have the right to be a part of victory. Therefore, allow yourself to love you and to be loved. Allow yourself to be driven by the force of the gift of HOPE to a point that you will survive.

This small-framed man, whose life was stricken with sickness and diseases, taught me to smile through the struggle and to laugh through the pain. He showed me that a person must learn to find peace in whatever situation they are currently in. As he laid there in hospice care, he took pictures with what we call a “Kool-Aid” smile as he peacefully transitioned over to a place of rest.

This column is dedicated to a small-framed man who unknowingly spreaded the gift of HOPE! Tyeshia Alston is a native of Dallas, Texas, and an HIV/AIDS activist, who “will go anywhere where people will listen.” She has done everything from travel to D.C. to speak with legislators about better healthcare access and how the disease has impacted communities to serving on panels for NMAC and other organizations and bringing her message to talk shows. In 2005 at the age of twenty-five, Alston was diagnosed with HIV and she has been on a mission since 2006 to educate people (especially our youth) about HIV/ AIDS. Visit www.saaved.org to learn more about her community-based work. Also, if you have any questions or comments please feel free to email Ms. Alston at saaved2heal@gmail.com.

A&U • SEPTEMBER 2015

Bringing hearts together since 1998

P zMatch.c m

Hey Justin— I’m Samuel, but you can call me Sam. Okay I know you probably get a lot of questions e-mailed to you but thank you for reading.

I first heard of you when I read your column for Baltimore Gay Life newspaper and now I’m loving the advice column “Just*in Time”; it’s such a great resource for people living with HIV. I’ve been living with HIV since I was eighteen and now I’m twenty-five living strong. I made my first speech as a person living with HIV a couple years ago and it felt really good. Speaking of years back I remember you were on Norvir, Truvada and Reyataz at one point in time. How did you like that medication? Did you have the gel caps for Norvir? When traveling how did that go with the gel caps?

—Sam Well, let me say thank you first and foremost for following my work. It is really important that activists and advocates in the public health field are able to reach the population, thus influencing policy and people’s mindsets about certain populations and illnesses. Speaking out as a HIV-positive person can be therapeutic and empowering for the one speaking and at the same time educational for those that are listening to you.

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Since 2010 the Food and Drug Administration (FDA) approved the tablet form of Norvir to be prescribed to those who need it. Since then I honestly don’t know anyone who is on Norvir that still takes the soft gel tablets, unless they haven’t told me yet. Now I’m on Complera, which is a one-pill-a-day regimen. I like it a lot.

Sam, keep on speaking to the people; they need to be educated on HIV and as long as there is no cure then we need to keep trying to prevent HIV incidences, especially in countries that are not as developed as others.

Justin— Hey, sexy Justin, I am a future adult entertainer and I’m a little scared. I’m seeing more and more adult movies coming out that are geared toward bareback sex. Do you think this is true? I was always taught that bareback sex was bad. What is your opinion on barebacking?

—Future Adult Entertainer First, thank you for the sexy compliment. To bareback or not to bareback is a decision we all have to make on our own. As a public health professional all I can do is tell you to weigh your options. If you decide to have bareback sex and you have tested negative, I would suggest you talk to your doctor about pre-exposure prophylaxis (PrEP). As you might know the

CDC has stated it is about ninety-percent effective in preventing HIV infection between one person and another.

In the past the community and myself were anti-barebacking. People who barebacked were often looked down upon and were basically slut-shamed, which is detrimental to any population. If that is not what you are into, who are you to tell others what to do with other consenting adults? It’s really nobody’s business. My opinion on barebacking is that as long as you and your sexual partner(s) know the risk and are okay with them, who am I to try and stop you?

The adult industry has seen its multiple scares of sexually transmitted infections (STIs), even though they do try to safeguard their workers from HIV and other STIs. But sometimes YOU must take the initiative and safeguard yourself, especially if you’re going into the bareback adult industry. I myself admit that I watch bareback porn and I don’t look at any of my friends that do bareback porn any different than my friends who are adult entertainers that don’t. We should not judge the men and women who are in the adult entertainment industry; in fact, I was once a stripper and an escort and I don’t mind telling my story. Just remember to take responsibility for your own health on either path you take.◊

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 jsmithco98@hotmail.com.

A&U • SEPTEMBER 2015

JULY 2015 • A&U

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A MOVING MIGRATION A Powerful Documentary Features the Stories of Thirteen Men Living with HIV, Growing Old & Starting Over in the California Desert

by Chip Alfred

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ith its warm weather and spectacular scenery, Palm Springs has been a mecca for Hollywood stars and snowbird retirees for years. Over the last few decades, it’s become a magnet for mature HIV-positive gays looking for a fresh start. Desert Migration, a new documentary film, presents a poignant, brutally honest glimpse into the lives of these long-term survivors who saw their friends dying all around them and lived longer than they ever imagined.

Now they’re seeking refuge, searching for new connections, and hoping for second chances in an oasis in the desert.

“We wanted to make a film that is much more focused on emotion than information,” says producer Marc Smolowitz, forty-six.

In this visually stunning, unconventional documentary, there are no talking heads and no expert commentaries. The stories are told with day-in-the-life scenarios of each man accompanied by his own voiceover narrative.

“With this ensemble of men, you get such a

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diverse panorama of perspectives and experience and nuances of aging in these interwoven stories.” Like Doc, a pierced, tattooed, polyamorous man who left a high-profile career in Los Angeles. “At the point that my health got to the juncture that I could no longer keep up with an…incredibly demanding job, I decided to change my life so I wouldn’t die,” Doc says. So he relocated to Palm Springs, as did Bill, a muscle daddy type with a healthy dose of optimism, who shares, “I don’t think of HIV as a flaw anymore. Many of my friends have it. All of us have a very different set of experiences, but we’re able to talk about it with each other. That’s an important thing. Without my friends, it would be really intolerable.”

Writer/director Daniel Cardone, forty-two, points out that although the film focuses on a small subset of gay men living with HIV, there are some universal themes. “When life keeps kicking you, what makes you want to get back up and carry on? You really have to find that thing or those things that bring you joy and don’t

let anyone else take it away from you.” The movie doesn’t tread lightly when it comes to tackling some tough subjects including death, depression, and addiction. The men are very candid about their physical and mental health challenges, and admit they sometimes can’t see the light at the end of the tunnel. “I always feel a sense of invisibility here,” says Steven, the only black man in the group. “It’s much easier to have sex than it is to develop a friendship.

As you get older, you wonder: Is there going to be companionship? Is there going to be somebody there? Is this something I’m going to have to go through alone?”

Some of the guys came to Palm Springs preparing for the end, but they found new beginnings instead. “I wanted to die in a place I really loved,” says Joel, a gentle soul who finds solace in the company of his pets. “I knew there was a chance I might live, but I really didn’t know which way it was going to go. When I got off the plane here…it felt so wonderful.” Cardone, who has been living with HIV for two decades,

A&U • SEPTEMBER 2015

photos courtesy Desert Migration © 13th Gen LLC

explains. “This wasn’t about telling a story about HIV and AIDS. It was telling a story about finding purpose in life and using this group of people who thought they were going to die and sort of got their lives back.” Bill asserts, “The ones that aren’t thriving are the ones that can’t seem to find meaning in life. There’s meaning all over the place. You just have to go get it.”

A few of the men feel HIV has changed them for the better. “Being positive has brought so much to my life that I never thought would be here,” declares Doug, a fit, handsome, former professional dancer.

“I have so many compassionate friends and family members that are nurturing in so many ways…that I could never imagine.

I don’t know if my life would have such richness if I wasn’t positive.”

Smolowitz, also a long-term survivor, says he wanted to make a film that would be a part of the national conversation about HIV and aging. He contends that these men represent the first truly out aging cohort of gay men in modern America. Steve, one half of an HIV-positive couple, explains, “We’ve lost an entire generation of men who would have been ten or fifteen years older. My generation is grasping at straws as to what the values are and what life is going to be like as we get older because it’s not a known entity.”

Keith, a former well-to-do HIV activist and philanthropist, agrees. “There haven’t been a lot of role models. What do gay men do in their fifties, sixties, seventies?”

Cardone, who migrated from Australia and settled in Palm Springs with his SEPTEMBER 2015 • A&U

husband, says the resort community has an energy all its own. “Where cities are like streams, Palm Springs is like a lake.

You have to find something to propel you through the lake. You’re forced to look into yourself and create your own reality, your own new direction.” Migration marks the second cinematic collaboration for Cardone and Smolowitz, who worked together on Still Around, an award-winning short film compilation marking the thirtieth anniversary of AIDS in 2011. Both films are projects of The

Cardone. “It’s a wonderful thing to make a movie that matters to people,” Smolowitz adds. “This is a film that will be filling a space in the story landscape.”

Next up for Migration is a series of screenings at queer film festivals across the country.

Smolowitz hopes the film will also reach a broader audience. “I want every HIV organization to have screening events, own a copy of the film and use it in their work.” Smolowitz and The HIV Story Project are looking ahead

Clockwise from opposite page: Doc in the desert; Jeff and Steve in bed; Doc meditating

HIV Story Project, a San Francisco-based non-profit focused on bridging HIV/ AIDS with film, media and storytelling.

Smolowitz, who serves as the organization’s executive director, is pleased to see the reaction this film is receiving. After a packed world premiere at Frameline39, the San Francisco International LGBTQ Film Festival at the storied Castro Theater, the documentary is doing exactly what the filmmakers intended it to do—sparking a dialogue. “It’s designed to stimulate conversation and thought and feeling,” says

to the fortieth anniversary of HIV/AIDS and exploring how the narrative has changed.

“There are lots and lots of stories that haven’t been told. I’m a filmmaker and a storyteller and I’m going to keep on doing this until this thing is over.”

For more information about Desert Migration, please visit http://thehivstoryproject.org.

Chip Alfred is A&U’s Editor at Large based in Philadelphia.

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the E TH

T N O R F S

D I A

ion t i ib ow t h E x o n Ha i n s w t t N e c h e s t A ge d a i d n ’ A u igh rt D To e F S t a B u t th DS e— e AI om her H d T ong E n ster Str Le by

“I

n this show I wanted to explore the question: Beyond the stereotypes of sex-crazed weirdos, just how do gay men and lesbians live their lives? Are we or are we not just like everyone else?”

That was the reply by James Saslow to the initial question in a recent interview about the photographic and art exhibition he has curated titled On the Domestic Front: Scenes of Everyday Queer Life, currently on view at the Leslie-Lohman Gay Art Museum in New York City through October 25. The show explores gay men and lesbians at home, at work, Keith Haring, Unand at play in a time span stretching titled, 1987, poster from the late nineteenth century art print (used as until today. And while it amply the cover image for demonstrates that in many ways they the AIDS-benefit LP have much in common with their album Red Hot + heterosexual counterparts—eating, Dance, produced in sleeping, cleaning, raising children, 1992 by the Red Hot vacationing, going to the gym or the Organization, 12 by beach, holding down jobs—in one 12 inches); image way during the past thirty-five years © Keith Haring their lives have often differed greatly: Foundation; album the amount of time they have spent at in the collection of bedsides caring for the sick or dying Leslie-Lohman Gay during the AIDS epidemic.

Art Museum We might call this “the AIDS front.”

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A&U • SEPTEMBER 2015

A&U Gallery

“It’s a constant shadow,” said Saslow when asked how the disease enters into the exhibition. “Whenever you look at the domestic lives of gay men especially these days, you have to wonder if anyone portrayed in the photo was affected by AIDS. I wouldn’t be surprised if many of the people shown in the more recent photos were living with AIDS or HIV but didn’t know it.”

The disease is certainly front and center in several photos included in the show.

“One is by this wonderful photographer Sage Sohier, which she took in 1986,” said Saslow. “It’s titled simply David and Eric, Boston. You have an intimate view into part of a typical gay male couple’s home. The two men are in their bedroom. They’re not wearing shirts, and the one in front is staring off rather mysteriously into space.

You see the IV pole and gradually you realize that one or both of them are sick and under treatment. A good example of an orSEPTEMBER 2015 • A&U

dinary domestic scene, but made poignant by the knowledge that these two are coping with a serious illness at home—not exactly what everybody does all the time.”

Another image is set in a hospital.

“Titled Zayin, New York Shadows (David Wojnarowicz), this oil painting done in 2000 by Douglas Blanchard commemorates Wojnarowicz’s death from AIDS in 1994,” said Saslow. “It’s very powerful because it contains a recognizable face.

Wojnarowicz in his art and activism was so identified with AIDS that the work is almost like a tribute to everything he was and did. I included it in the show because while a hospital is a public space outside the home, it became an extension of the intimacy of the home where many many gay people lived temporarily while sick themselves or caring for their loved ones who were confined to hospitals because of AIDS.” A third image relates to a certain kind

Douglas Blanchard, Zayin, New York Shadows (David Wojnarowicz), 2000, oil on linen, 25 by 30 inches; collection of Leslie-Lohman Gay Art Museum of “play” engaged in by many gay men and lesbians before, during, and after the height of the AIDS epidemic: dancing.

“Red Hot + Dance was a compilation album of dance music released in 1992,” said Saslow. “Spearheaded by George Michael, it contained music and remixes of music

by George Michael, Madonna, Seal, PM Dawn, EMF, and Sly & the Family Stone, among many others. It was produced by the Red Hot Organization, with cover art

by Keith Haring. The Red Hot Organization is dedicated to raising money for AIDS causes, and the cover shows, in typical Haring style, disco dancers. It’s a good example of how the gay and lesbian community, along with their straight friends, rallied to help those who were sick during the worst part of the crisis.”

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Still a fourth image, titled Sidewalk Diversity and taken by the West Coast photographer Rink at the San Francisco Castro Street Fair in 1990, may well be AIDS-related. “The fellow in the wheelchair probably had AIDS,” commented Saslow.

“The timing is right, although since he’s unidentified, we’ll never know for sure.”

Saslow also named a number of individuals with work in the show who died of AIDS: the painter Patrick Angus (died 1994), photographer Peter Hujar (died 1987), fashion/design/advertising illustrator George Stavrinos (died 1992), and of course Keith Haring (died 1990). “We lost so many talented people to AIDS,” he added. “All these years later, and I’m still shocked at the losses.”

Like all of us, Saslow encountered AIDS in his personal life many years ago.

Professor of Renaissance Art and Theater at the City University of New York until his recent retirement, he is also the award-winning author of Ganymede in the Renaissance: Homosexuality in Art and Society (1983) and Pictures and Passions: A History of Homosexuality in the Visual Arts (1999), among many other books and scholarly articles. But in the early 1980s, near the start of his academic career, he was also the New York cultural reporter for The Advocate. “My editor at the magazine, Brent Harris, came from Los Angeles to visit, and we had a business lunch in late December 1980 or early January 1981,” Saslow said. “He complained he wasn’t feeling well, and said he had these strange marks on his body. He said he was going to a doctor when he returned to California to have this checked out. He was dead about four months later, and a month or two after that came the announcement about a group of young gay men in the Los Angeles area sick or dying of a mysterious illness having to do with suppressed immune systems. Retroactively we all understood that Brent died of AIDS, but of course he himself never actually knew that.”

Asked how AIDS impacted the domestic front of the gay population during the years when an HIV-positive diagnosis was tantamount to an early death, Saslow replied: “I experienced some of that in my own life, and it has a couple of answers, depending on who you were. If you had AIDS, it started to limit your life. You couldn’t leave your home if you were sick or so immune-suppressed you couldn’t expose yourself to germs. When you got very sick, you couldn’t get out of bed, whether

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Top: Peter Hujar, Christopher Street Pier #3, 1976, vintage silver gelatin print, 20 by 16 inches; collection of Leslie-Lohman Gay Art Museum Right: Patrick Angus, Self-Portrait as Picasso, ca.

1980s, acrylic on canvas, 54 by 40 inches; collection of Leslie-Lohman Gay Art Museum at home or in a hospital. You couldn’t travel.

You weren’t in good enough condition to do much of anything.”

He continued: “If you yourself were well, it meant you spent a lot more time out of your home in hospitals caring for sick or dying friends who weren’t getting A&U • SEPTEMBER 2015

A&U Gallery

the proper care they needed by medical staff terrified of the disease. It meant people disappearing from your life and whole sections of your social circle being cut away as friends died one after the other. Social networks shrank, and in some cases never grew back. Other people go through this. My mother, for example, is eighty-seven-years-old. She’s seen a lot of her friends die, and even after my father passed many years ago, she saw her social connections change and in some cases shrink. It’s always sad. But when you’re in your twenties or thirties, and so many friends are dying.….”

On the Domestic Front reveals a gay world of fun and play, of everyday concerns, of friendship, love, and companionship. Most of it also harks back to a time when gay life was much more hidden than it is today because being openly gay incurred the risk of penalties ranging from social ostracism and public humiliation to job loss to jail time.

Even today vitreolic physical and verbal assaults, including political gay-bashing, are hardly things of the past.

“I see the show as a political statement couched as an artistic statement,” said Saslow near the end of the interview.

The artistic statement can’t be missed in the many fascinating images showing SEPTEMBER 2015 • A&U

the span of gay domestic activities over so many decades. As for the political statement, Saslow expressed it as follows in an article he wrote for the Spring 2015 issue of Leslie-Lohman’s journal The Archive: “The exhibition’s theme of domesticity is especially timely in a decade that has seen the unprecedented mushrooming of gay marriage and child rearing, and their gradual acceptance both legally and socially. The goal of queer liberation has shifted from our right to be different and erotic toward the right to do what everyone else does.”

On the Domestic Front is an entertaining, well-conceived glimpse into over a century of gay and lesbian life that has brought the U.S. gay population into a remarkable new era of gay rights affirmed and a large degree of social acceptance achieved.

Who as little as twenty years ago could have predicted that in 2015 gay marriage would be declared a constitutionally protected right by the U.S. Supreme Court?

Who could have foreseen that in the same year New York City would designate the Stonewall Inn in Greenwich Village—the site of a 1969 riot by drag queens and other gay bar patrons considered the central event that propelled the gay rights movement into mainstream American

Sage Sohier, David and Eric, Boston, 1986, archival pigment print, 15.5 by 23 inches; collection of Leslie-Lohman Gay Art Museum

and even global consciousness—a historic landmark right up there with Grand Central Station?

Nevertheless, the AIDS front still shadowing gay life today reminds us that not all issues affecting gay people are political in nature, susceptible to legislative or judicial solutions. And isn’t it ironic that the spread of HIV into new populations far beyond the gay male locus of its first public manifestation in the early 1980s underscores in its own horrible, terrible way the right of everyone else to share the same nightmare that has plagued gay life for several decades now?

For more information about “On the Domestic Front,” running from August 25–October 25, at Leslie-Lohman Museum of Gay and Lesbian Art, visit www.leslielohman.org.

Lester Strong is Special Projects Editor of A&U.

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Hey Mr. DJ! The “Smallest Kid in the Class” Plays a Big Role in the South Text and Photos by Sean Black

R

aised along the golden marshes of the Brunswick River, just north of the Florida/Georgia line, Derek Canas’s life today is manageable, even good by his own admission but over the years it hasn’t been easy. Derek is, in fact, lucky to be alive. Now thirty years-of-age, the deejay activist stands five feet tall and weighs give-or-take 100 lbs. “I’m probably the most extreme version of an AIDS patient you’ll see since the nineties.” Behind kind brown eyes, his blunt self-assessment isn’t without merit.

His slight frame wears the physical ravages of years of compromised health stemming from a birth defect that urgently needed to be corrected in 1985, which also exposed the infant to tainted blood.

“I was three months-old,” Derek begins in a calming, country-drawl speaking of his congenital heart problem. “During surgery and recovery, I required blood transfusions from the blood bank. Fifteen years went by after the procedures. I was sick constantly and was always the smallest kid in school. My family was told that I would always be little due to my heart. I didn’t find out about the virus until freshman year of high school.”

His friends growing up were gentler than most. “I was never treated differently, but during those years I only knew of my heart problem. Derek acknowledges the bullying that he was spared—a bullet that many other ‘different’ children with telltale health ailments haven’t been able to dodge. “The only rough moments of childhood were when I got sick every year with pneumonia or bronchitis and I was [medically] treated then released

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from the hospital.”

Looking back, Derek can see in photographs that he was taller than his cousin Morgan who is three months his junior, but the virus stopped him from growing and also created a curve in his spine. “I would have been fairly tall and normal weight if the virus had only been discovered earlier.” Derek’s resilience allows him to move beyond these blows and take them in stride today. “All of that on top of a heart condition that left me needing pacemakers—I’m on my fourth one now.”

His survival over those sixteen, undiagnosed years with the subsequent touch-andgoes of advanced disease progression, he credits to the level of nurturing that he still receives today from family members including both sets of grandparents.

Jim, Derek’s maternal grandfather, whom he lovingly refers to as Popop is a retired Marine Corps Captain who served in both Korea and Vietnam. “He’s the guy that I get some of my ‘old-man’ habits from,” Derek jokes with pride. “We go to lunch all the time and he is the person I would call when I was ready to leave the hospital. When you want to get discharged from the hospital quickly call a Marine they will get the job done!” Jim’s wife Shirley, Derek’s “Nanny,” ran her own beauty shop for over twenty years and has been Derek’s nurse, personal chef and his barber. “She is always trying to feed me,” he attests. “I try to refuse but I still get a plate set in front of me because she knows that I’ll stop resisting and eat just so that she can sleep easier.”

His father’s parents, Manuel and LyA&U • SEPTEMBER 2015

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A&U • AUGUST 2015

nette, also take special care of community members, both Derek. “I look exactly like my HIV-positive and HIV-negGrandpa. I call him ‘Future ative, to translate their own Me’ because I know he is who experiences into policy I’ll look like down the road. He change through advocacy.” is the person who taught me Derek feels his story is how to fish and who is always unique enough that he has reminding me that I should the ability to “stop” people pray as he is very active in the and get them to see how church.” Although Derek was destructive the virus can be instilled with Catholic faith and when not attended to. “I’ve remembers hearing stories accomplished one dream of a loving God, he skeptically and that was to become a admits, “After I was diagnosed, DJ. Now my dream is to I lost my belief and notions of a be able to educate about caring God.” Lynette, “Granny,” HIV and promote testing. also “pushes the food,” he There is still so much bad notes with a smile. She drove a information out there and The Sidney Lanier Bridge, crossing the mouth of the Brunswick River, is a school bus when he was growonce that is corrected then the tidal landmark that evokes many great memories for Derek, including fishing up and after her long shifts ing with his grandfather and of the tournaments they would enter together. numbers of new infections would work as the secretary for will hopefully drop. I would to be the character ‘D-REK’ who is popular and her husband’s business. “How eventually like to have a onecan just enjoy life. It’s truly a transformation she has survived working for him for so long man show where I can tell my story, on my when I go to work and become this other perI’ll never know,” he playfully ribs. terms and show my sense of humor and son. I’m no longer the AIDS patient—I’m the Derek’s parents, Charlie and Lesa, were how laughter has gotten me through some deejay and everyone wants to party with me.” both very young when they had him. His very tough times.”

Derek just started an #EndTheStigma mother had just turned twenty-one and his Derek shares one of these stories. “It was Campaign under his moniker D-REK because dad was nineteen. Describing his motorcymy first hospital stay after being diagnosed it is so recognizable now in his coastal Southcle-riding father as a “daredevil,” Derek admits, and I had this very young nurse who was ern Georgia hometown. He hopes that his “My father was extremely upset when I was training an even younger nurse. The trainee popularity will gain listeners and his efforts will was going to start my IV. I have very easy veins diagnosed. I think it was because it made him feel helpless and he had to put so much faith in expand into other surrounding areas desperate and the poor girl slips and misses the vein and for outreach. In a report from the CDC, “At the my doctors.”

I proceed to bleed heavily. I grabbed gauze and end of 2010, the South accounted for largest His mother Lesa is his consummate angel. tape as she took the needle back out. I soaked percentage (45%) of the estimated 33,015 new “She spent all three months when I was in through two towels before I realized that I AIDS diagnoses in the United States.

ICU on the floor next to my crib. She never still had a tourniquet on. I grabbed it with my “The response to what I’m doing has been left my side. I think she always knew that I had teeth to turn it off and stop the bleeding. That more than just a heart problem, but my doctors great. I have angels and warriors all over town.” was my first night with the medical team that His mission echoes that of Treatment would always ease her instinctual fears away would help me get my health back on track.”

Action Group (TAG), the science-based until another issue was discovered.”

Derek can recall too many frightening think tank at the helm of policy and research His little sister Amber, he says, “looks up times with clarity along with the isolation he initiatives. Jeremiah Johnson, TAG’s HIV to her big brother”—a title he takes very serifelt. “Like, no one could really understand Prevention Research & Policy Coordinator, reously. “My diagnosis really hurt her. I saw her what I was going through. It was really difficently came knocking on his door. “Treatment cult. I thankfully had a few friends who were change afterwards. Her taste in music veered Action Group is thrilled to collaborate with toward very dark places and she always wore there for me [along with family] who kept me Derek on our HIV Prevention Advocate Edublack. She’s moved beyond that and is now moving forward and didn’t allow me to isolate. cation Initiative in Georgia.” Johnson reports, married and just awarded me a title of my The meds were intimidating at the beginning.

“There is an urgent need for greater commuown—‘uncle,’ which I’m so proud to have.

I was on twenty-two pills four times a day. I nity involvement at the state and local levels to was fifty-five pounds when I was diagnosed.

No little girl should ever see her big brother push for policy changes that improve access to My body was shutting down—I had wasting constantly in hospitals.” the most advanced HIV testing technologies, Grateful for his familial fortune, Derek syndrome. I was thankfully able to rebuild my PrEP, PEP, condoms, clean syringes, and all currently deejays at Ziggy’s, a dance club on immune system and I became undetectable other essential tools that HIV negative individ- in just under three years. I’ve died three times nearby St. Simons Island founded and run by uals need to stay negative.”

Keenan “Ziggy” Carter, who sang and enterover the past thirty years—all during heart He continues, “It is for this reason that tained in the early 1990s at the famed Rainbow procedures but I always come back. I don’t TAG will begin convening state and city level Room in NYC’s Rockefeller Center. With the know why but I do know that I am committed workshops this fall to give HIV prevention occasional out-of-town gig, Derek keeps the to leaving this place a little better.” advocates [like Derek] the information and crowds hopping. His favorite style of music is networking they need to tear down barridubstep and he likes faster, more upbeat styles Follow Derek Canas on Twitter @DJDREK84. ers to comprehensive prevention services. of music same as his taste in cars. When we For more information about Treatment Action Derek’s inspiring efforts to create change met Derek pulled up in a sleek white 2014 Group, visit www.treatmentactiongroup.org.

Camaro with black racing stripes. “Deejaying is through his personal experiences represent the spirit of the project. We need passionate a true escape for me,” he shares. “It allows me Sean Black is a Senior Editor of A&U. SEPTEMBER 2015 • A&U

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the

InsandofOuts Happy Sex DR. RACHAEL ROSS SLAPS NO BANDAGE ON THE DEEP WOUNDS OF THE EPIDEMIC. INSTEAD HER Rx IS TO KILL THE VIRUS AT ITS INTIMATE ROOTS

BY DANN DULIN Photographed Exclusively for A&U by Sean Black

T

he doctor is in and she’s making house calls.

Though slight in stature and calm in demeanor, make no bones about it, sexologist Dr. Rachael Ross means business. She’s fervent about shaking up her viewers on The Doctors with her signature hardball style. “HIV prevention has been the center of my existence before I was legal to drink,” says Dr. Ross, who’s cautious to reveal her age.

Raised in Gary, Indiana, she comes from a close family of doctors and nine siblings. Her father, David, and brother, Nathaniel, are in practice and so was her sister Rebekkah until her death in 2011 from complications related to sickle cell anemia. Dr. Rachael, who lives in Chicago, still maintains her family practice in Gary.

Losing her sister, who was thirteen months Rachael’s junior, was a colossal blow to Rachael. Both were acutely committed to mentoring girls in their hometown. In 2012, Dr. Ross received the prestigious Northwest Indiana’s International Service Award for her work. The National Council of Negro Women also recognized the medical duo’s philanthropy.

Dr. Ross is the author of Down Right Feel Right–Ou-

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tercourse: For Her & For Him (2009), an uncomplicated manual about safer intimate sex. She also speaks at colleges and high schools, and is a spokesperson for OraQuick, a self-administered rapid HIV test.

“We just never talk about sex—and how you get it,” she complains, bedecked in a black T-shirt that reads, “I Can’t Breathe” (referring to the words Eric Garner uttered to New York policemen who held him in the chokehold that killed him), a longish non-descript grey unbuttoned sweater, blue Jeans and navy blue UGGS. “Doesn’t seem like there is really anybody totally honest about it. We’ll say, ‘Use a condom,’ but what about the sex? We’re not addressing the fact that half way through intercourse the guy takes it off. We’re not talking about how it feels better without it. We’re not talking about ways to please your partner other than through penetration. Consequently, there’s a whole lot of education that’s lost,” she rhapsodizes, appending, “India has really staved off their infection rate to some extent because the government teaches ‘outer-course.’”

She continues. “We’re not talking about how you get that virus. We’re not talking about how you’re less likely A&U • SEPTEMBER 2015

AUGUST 2015 • A&U

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speaks on American campuses because they don’t have full knowledge about sex.

“They...have…no…idea!” she balks, taking a moment. “Drug companies make so much money off treating people who have the virus, and now they’re going to make even more money off people who don’t have it,” grouses Dr. Ross, referring to PrEP. “The conversation and the dollars aren’t targeting prevention. So if you don’t have a community that’s dedicated to prevention and pushing the message, then it gets drowned out.”

The African-American community is especially vulnerable. While studying at Vanderbilt in the mid-nineties, Rachael had a premonition. “Being in college, sex was in the air. We’d be at parties and people were having sex up against the wall. I said to myself, ‘This is going to be a black people problem—watch.’ I knew it!”

she says assertively. Right then she had an epiphany and decided to devote her career to educating people about STDs. She was further convinced during a trip to New York for spring break where she worked for an AIDS organization. She met two men who were dying, an older man and a young man who still appeared healthy. “This [scene] really hit home,” she remarks with an emotional plunk. “People were getting a deadly virus just by their love for each other by a physical act.”

Dr. Rachael graduated with a BA in anthropology from Vanderbilt University.

She earned her MD from Meharry Medical College in 2001 and her PhD from the American Academy of Clinical Sexologists.

Dr. Rachael’s ease in talking about intimate topics is refreshing. She gabs about it as though she were talking about last night’s dinner. Imagine the public A&U • SEPTEMBER 2015

photo courtesy Dr. Ross

to contract the virus if things are wetter, smoother, and gliding, or how vaginal dryness increases one’s risk. We’re not talking about why the anus makes one more susceptible than the vagina and why oral sex is less risky than penetration,” grumbles Rachael, taking a breath. “Having another STD also increases your risk.

“Such dialogue is missing from sex education and HIV prevention. It’s terrible,” laments Dr. Ross with frustration. “We’re in a piercing and tattoo culture, and we’re not talking about how putting holes in the skin increases one’s risk,” she stops and whispers, “if it’s not healed up. And if the virus gets on the needle, it can enter the bloodstream.”

She breaks and crosses her legs. “This should be common knowledge.”

Rachael is always surprised by the college students she encounters when she

Dr. Rachael Ross participates in a flash mob at Shriner’s Hospital for Children, one of many ways in which she engages the community.

health benefits if we could discuss sex with such bearing.

Cozied up on a light olive-colored malleable sofa in her petite but homey dressing room on the Paramount lot, Rachael just completed a taping of The Doctors. She has no airs and is charming and personable. Moments before we met, as I waited for her to leave the set, I was speaking with Andrea McKinnon, the show’s delightful publicist of the show. Dr. Ross approached us, politely extended her hand, and said, “I wanted to introduce myself and I’ll see you soon in my dressing room.”

Once we’re together in her dressing room, she offers me something to drink.

Rachael reaches into the miniature fridge and grabs a Pelligrino for me and chooses a Lime La Croix for herself.

“I think about the changing face of HIV,” she comments, her high-cheekSEPTEMBER 2015 • A&U

boned covergirl face looking as though she just ascended from a Chanel ad. “In the nineties, when I first started HIV outreach the target was gay men. Now HIV and AIDS has become a major problem within the African-American community.” She swiftly brushes her dazzling cascading hay-colored hair behind her ear, revealing a large hoop earring. “It’s different now than it was years ago with the gay community, who took it upon themselves to eradicate the virus. HIV has sort of become a chronic illness. It’s taken a backseat to prevention and so now things have shifted to just putting everybody on medication. And so the whole education component is just out the window.”

Rachael attributes the high rate of infection in the African-American community to behavior and socio-economic factors.

“I think that’s the difference between what’s happening in the African-American community versus what was happening in the gay community. There’s none of that hope or pride or love,” she clarifies, taking a sip of her sparkling water. “There are so many reasons to live! But there are so many problems in the hood,” indicates Dr. Ross with a deliberate fake chuckle. “It’s just like, ‘Take a number bitch!’”

Denial is a huge part of the problem, she believes. “It’s devastating to see the denial among African-American women.

When I look at their rate of infection in comparison to Latina and White women….” Rachael halts, not being able to find the words to finish, due to irritation.

“When I look at what’s happening in the culture, I know it’s due to partner-sharing.

The reason our risk is so high is because we’re attracted to a group of people who have a higher incidence of infection than other groups,” she says. “The culture of hip-hop pushes partner-sharing. Listen to our radio stations. Too many of the songs talk about sleeping with someone else’s girl or messin’ with someone else’s man.

All of that is propelling us into an HIV culture. And since so few are dying of it anymore…,” she softens and lowers her voice, “… it’s become the silent killer.”

On The Doctors, Dr. Ross has adamantly stated, “There’s no such thing as safe sex.”

She expounds, “There’s only saf-er sex.

The difference between safe sex and safer sex is that safe sex is the sex you have with yourself. Safer sex is reducing one’s risk.

Saf-er sex is using a condom. Saf-er sex is knowing your risk stratification.

“They should teach risk stratification in the schools like, ‘What’s the riskiest thing I can do at the moment?’ ‘What’s the least riskiest thing I can do sexually at this mo-

ment?’ ‘If I’ve got cuts all over my fingers and I bite my fingernails, well my fingers are off-limits.’ Understand that you have a greater risk through anal sex than you would through oral sex. Yes, you can still contract STDs but it’s safer. Saf-er,” she repeats. “It’s clinically proven to be safer. So when I say safer, I mean risk stratification.

“Ever since I was a youngster, in every sexual situation I think: ‘Who is this person? What are my risks? And what are the top things that I should not do and what things do I think I can get away with?’”

Dr. Rachael addresses the question of risk in Down Right Feel Right. It’s a dual-purpose book. One side of the book is for him, flip it over and the other side is for her. “The whole idea is to titillate and to educate at the same time,” she resolves. “It talks about the stuff we used to do as kids before we went on to penetration. This is the saf-er forms of sex. When we become adults, we get so caught up in penetration that we forget that there are other ways to orgasm, and other ways to please yourself and your partner.”

Outercourse is anything other than penetrative sex. “We’ve called it foreplay for so long because we’re used to believing that the real play is penetration,” the doctor explains, who has a striking resemblance to Beyoncé.

When one person in a relationship is HIV-positive, outercourse becomes a huge part of their life. In that situation they must create strategies to please each other and still be intimate. “As HIV rates go up, the likelihood of falling in love with someone who is HIV-positive becomes quite high. Studies show time and time again that people don’t automatically leave their partners when they find out that they have herpes or find out that they are HIV-positive,” she insists. “Love is love and you find a way to deal with that.”

Her book illustrates how people can decrease their risk of contracting HIV. It’s worth mentioning again: it’s about risk stratification—the riskiest and the least riskiest behaviors. When you are the receiver of penetrative sex, you are at way more risk than the person who is the penetrator.

“The tissue of the vagina is designed to be a lot more resistant to tearing than the anus,” she points out, leaning forward.

“For men having sex with men, it’s much easier [to contract HIV] because the anus tears more vigorously.”

“As for sex between a man and a woman, it is very easy for a woman to contract the virus, which is why the rates of infection for women are increasing. It’s because it’s so much easier for us.” Dr.

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Ross momentarily looks off toward the freestanding makeshift rack of clothes and the many pairs of shoes that line one side of the wall. On the shelf above are framed family photographs, a few wine bottles, books, including Reader’s Digest, votive candles, and other paraphernalia.

“If you think about the lining of a vagina, it’s kind of like your mouth, it’s easy to cut. If you eat some Cheerios or suck on a sucker too hard, you get a little sore in your mouth. HIV goes in through the cut and the vagina is so porous. But the penis is not too different from the skin on your hand. And without there actually being a herpes lesion or a cut on there, it’s harder for HIV to pass through to the bloodstream,” she says.

What about male condoms versus female condoms? Dr. Rachael displays a spirited foxy smile. “You know what?

Women ….and men,” she pauses for effect, “enjoy the female condom. If you take a straight couple that doesn’t even know the female condom exists, and I introduce them to it, they look at it and say, ‘Okay, what is this contraption? It looks kind of crazy.’ Then they use it. Nine times out of ten they’re going to say they enjoyed it way more than the male condom. The female condom feels freer. It’s not like he has a sheath on. I love female condoms,” she exclaims. “I’m a big fan.”

In developing countries people wash out the condom for reuse. In America, typically, people will use it once. Female condoms are used for anal sex in developing countries, as well, but the marketers aren’t comfortable about advertising this in the USA. “When you talk to the manufacturers and you ask them, ‘Why don’t you market these more?!’ They answer, ‘American women are too squeamish to spend the time to stick [the condom] in. It’s just not a culturally sound thing for them to do.’

Thus, the company doesn’t spend as much marketing dollars here as they do in other countries because they recognize our fear of even touching ourselves or talking about ourselves down there.

“I’m excited about this type of technology,” raves Rachael. “Anything that creates a sheath along the part that’s vulnerable—the anus or the vagina—is definitely going to be a winner. It also warms up to body temperature. It’s made out of polyurethane, so you have less allergic reactions because there’s no latex involved.

You put the lube on it and everything just slips and slides.

“The female condom is easy to use.

You can put it in before you go out on a date. When that heat of the moment SEPTEMBER 2015 • A&U

comes, you’re prepared,” she spiritedly offers.

As for the male condom, everyone has heard guys chant, “Condoms disturb the flow of intimacy.” Dr. Rachael responds, “If that’s your thought process, you can end up dead.” To get over that mental obstacle, she instructs men to practice with condoms, learning how to open the packet in the dark. “Get familiar with the condom,” she urges. “Masturbate wearing a condom. Get used to cumming in one.

Train yourself.”

She adds, “There’s such a hang-up about anal sex, too. ‘If I tell my girlfriend or my wife that that’s something I want to do, I’m less of a man. But if I just get a guy to do it, then it evens itself out.’ It’s such a weird thought process....”

In addition to the pervasive macho attitudes in many cultures, the false notion commonly exists that if you know someone well, you can trust them. “‘I’ve known him for a month now,’” mimics Rachael countering, “Yeh, but just because you’ve known him for four weeks doesn’t mean he doesn’t have anything. We get too comfortable. Only when both of you have tested negative, can you trust each other,” she advises then ponders.

Tilting her head, Dr. Ross slightly grins, “Eventually there still may be some risk—because people do lie...and that’s evident on-line. Studies show that by the time people meet, after they have exchanged photos and texted each other, they are more likely to trust and have unprotected sex quicker,” she contends. “Online meeting breeds this false comfort.

After all, you still don’t know this joker...!”

She shifts positions then daintily adjusts her sweater, her hot pink nails evident.

“On the Internet, most people are making up stories anyway. I try to encourage kids not to be on there [social media] all the time. If you can get them to temper their social media, they really start to feel better about themselves,” she insists. “This works well for adults, too!”

Media can certainly contain mixed messages that haze our reality. Case in point, several years ago when there appeared an ad for OraQuick, it was a photograph of a smiling Magic Johnson dressed in a white T-shirt, with the caption, “You can live healthy with HIV.” Emphasizes Dr. Ross, “It was a billboard that was in every major ghetto in America. To me, it insinuates that we’ve lost the fight for not getting it. We’re saying, ‘Well, it’s okay if you get infected. You can be healthy and you can live long as long as you take your medicine like I do.’ That’s the part of that message I don’t like,” she

remarks minimally perturbed. “I don’t like the idea that it’s okay to get HIV and take medication for the rest of your life.

Who knows what this medication is going to do in the long-term?!”

There’s a tap on the door. A peer peeks in to remind her of a short production meeting coming up before they tape another show. Rachael replies that she’ll be there soon. Dr. Ross carries on where she left off, passionate about saving lives. You want her on your side.

“Also, since there are different types of HIV strains. If someone gets infected, maybe the particular drugs on the market will not treat your kind of virus.” As for her take on PrEP, Dr. Rachael doesn’t have a definitive answer. “I’m not convinced that a whole community needs to be popping a pill that I know can cause renal failure. We just don’t know enough about the longterm effects of antiviral drugs.”

Dr. Ross hopes that media coverage about the virus will not continue to decline.

“What saddens me is that when it’s Black HIV Awareness Day or World AIDS Day, it’s virtually impossible to get booked on a show to talk about it. It’s become old news and nobody’s interested in the subject right now. What they’d rather have me talk about is how to give somebody a great blowjob!”

Though the epidemic may not be a sexy topic, Dr. Ross is—and she’s our Town Crier. Charismatic and engaging, people perk up and tend to listen to her sage words. During our time together I tell her that she’s the new Dr. Ruth (a sex therapist who became an icon in the eighties known for her frankness, opening the closet on talking freely about sex). She’s very gracious to my compliment. But Rachael insists that it’s going to take someone like Rock Hudson or Ryan White to come forward to put the epidemic back in the news.

“I know there are celebrities out there who are HIV-affected and I wish some of them would come forward—‘I have HIV and this is what I’m living with…’ It’s going to take something like this to reenergize the movement.” She broadens her sparkling mahogany-ebony eyes and concludes, “The face of HIV and AIDS is gonna have to be somebody who...has the virus.”

For more info, log on to: www.drrachael.com.

A special thank you to Susie Odjakjian for her keen ear and grammatical expertise. Post-production (Digital Styling): Eve Harlowe Art & Photography; www.EveHarlowe.com. Make-up and hair: Geno Freeman.

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Dancing for a Cause Joseph Rivera, Cofounder of Baila Society dance company, shows us the moves to fight the AIDS epidemic Text & Photos by Alina Oswald

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riters paint with words, photographers with light. Dancers? With rhythm, agrees Joseph Rivera, cofounder of Baila Society, a New York City salsa instruction and performance company, and founder of Bailando Por Una Causa (Dancing for a Cause), an annual benefit event organized by Baila Society to support the Latino Commission on AIDS. Sporting a beard, and wearing t-shirt and baseball cap, Rivera makes time to meet me in New York City, only a few days prior to his trip to India, where he is traveling with five other Baila Society dancers, for the International Indian Dance Congress.

Founded nine years ago this past August, Baila Society distinguishes itself not only through the professionalism of its instructors and the dance techniques they teach, but also through the experimental ways in which they teach, explore, and try to elevate salsa. “That doesn’t mean that people who came before us were not talented or did not elevate the dance in their own way,” Rivera explains, “but it means that we try to cast it in a different light, [and to] gravitate toward the technique of it, and the discipline that it takes to be a really strong dancer. We built our dance company around that, and people respond to it.”

Salsa started in West Africa, and crossed the ocean with the slave trade. It developed in Cuba, from where it made its way to Puerto Rico, and then to New

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York. “Salsa, to me,” Rivera says, “is an evolution in music that cannot be claimed by any one people or any one beat or musician. It got here as a result of travel.” Salsa is a social dance that started in the streets, and, while maintaining this important characteristic of salsa, Baila Society also wants to put the dance on the big stage.

While talking about salsa dancing, I have to inquire about a few salsa tips. And Rivera is happy to share a few important ones: First, he shares, “make sure you get into salsa dancing for the right reasons.

“Do it for the dance itself, not to meet guys or girls (although if it happens to meet someone at a salsa class, that’s ok, too). But, if it’s not about the dance, people will notice, and it becomes unattractive. That’s not the right motivation.”

Second, “in order to become a good dancer, you have to treat salsa as a foreign language you want to learn.

“When you learn a language, you have to immerse yourself in it. In order to become a fluent speaker, you really need to live in the country whose language you want to learn.

“The same rules apply when it comes to learning salsa, or any dance for that matter. In order to become good at it, you need to take classes to learn the steps and techniques, and then you need to go out and dance socially. If you are fortunate enough to live in a place like New York City, there are a lot of places

where you can dance socially.

“The biggest deterrent of going out and dancing socially is the fear of making mistakes, but that’s part of the learning process. Admitting your mistakes is easier said than done, because the ego is often involved. One tip to survive your mistakes is to smile them off. When you make a mistake, smile, follow polite protocol—invite your partner to and from the dance floor, for example—and keep on dancing.”

Pondering upon these salsa tips, I A&U • SEPTEMBER 2015

realize that they could apply, at least in part, to learning the language of HIV/ AIDS prevention. That is, for example, remember the importance of protecting yourself against the virus not only when it’s mentioned during a workshop or in a book or movie, but also on a regular basis, in everyday life.

And speaking of life and life stories, as fascinating as it is to hear about salsa, it’s even more fascinating to hear Rivera’s remarkable life story. Joseph Rivera SEPTEMBER 2015 • A&U

comes from a Puerto Rican family. His mother died of AIDS-related causes in 1995. His father is living with the virus, himself a testimony of what available medications can do to keep the virus at bay. When I hint at Rivera’s own HIV status, he is not only willing to answer my question, but also explains that it’s easy to answer it. “I’m fortunate that my status is negative,” the thirty-six year old says, “but [that’s not] to say that if I didn’t contract [HIV] from birth, I

couldn’t have contracted it later.”

Organizing Bailando Por Una Causa has allowed him to talk more openly about HIV and AIDS, but truth is that, even though he was negative, HIV/AIDS was a really difficult topic for him to discuss growing up. “It was difficult for me to really come to grips with it, because of the stigma,” Rivera says. “Stigma can have a very strong effect on people.”

At a young age, Rivera went away to boarding schools, where he was sur-

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rounded by a lot of people, usually white, non-Hispanic people with a lot of money, while he was a young Latino scholarship kid who got an opportunity to study at these private boarding schools in New Hampshire and Connecticut. He then went to Georgetown University, graduated at twenty-one, and got a job starting out on the finance side of things at a financial media and research company.

However, he began teaching himself graphic and web design, advancing within the company, becoming director

Bailando Por Una Causa.

Some six years ago Rivera was working on the benefits committee of the Latino Commission on AIDS, “a nonprofit membership organization dedicated to fighting the spread of HIV/AIDS in the Latino community,” and decided to organize an event to benefit the commission. Since October is Hispanic Heritage Month, and the National Latino HIV/AIDS Awareness Day falls on October 15, it felt only natural for the new benefit event, Bailando Por Una Causa, to take place during the same

In the Latino community there is a disproportionately higher rate of HIV infection than among whites, in part because of poverty, lower annual incomes, and, to some extent, a lack of education.

“If you don’t have the resources, you are not going to go to the doctor. The more money you have, the more likely you are to get annual checkups,” he points out.

Staying protected is the key. In this day and age, there is really no reason for people not to know how to protect themselves from HIV, for youth not to

of interactive design.

While in school for eleven years, away from home and from his people, all he wanted to do was fit in. “The last thing I wanted was be a charity kid,” Rivera says.

“I didn’t need them judging me or my family. I had to be hard on myself.”

But while away at school, he drifted away from his culture. Then one day, five years after graduating college, one of his friends invited Rivera to a salsa club.

“I thought I knew what I was doing, because I was Puerto Rican, and all Puerto Ricans know how to dance,” Rivera recalls, “but I didn’t know how to dance, and I embarrassed myself. And it was at that moment that I told myself ‘I am going to learn how to dance salsa.’” Taking dance classes and listening to the music brought him back to his childhood.

He cofounded Baila Society in 2006, together with that friend, Daniel Enskat, and Ahtoy WonPat-Borja. In December of 2014, Rivera quit his job as director of interactive design, in order to pursue his passions, and focus on Baila Society and

month. This year, on October 24, Bailando Por Una Causa will again benefit not only the Latino Commission on AIDS, but also emerging dance companies. The ninety-minute-long event includes twelve to fifteen different dance performances, from salsa and samba to tango and other modern and traditional dances. Now in its sixth year, the event and the after-party are hosted at the El Museo del Barrio, which represents Latino art and is located on Museum Mile in Manhattan.

But even more valuable than raising money for nonprofits is using Bailando Por Una Causa to bring out into the open the fact that HIV/AIDS is still prevalent in the Latino community. “I think stigma is an issue. It’s why we don’t hear about HIV/AIDS as we did in the past,” Rivera explains. He also adds that, with today’s medications, the public awareness and the urgency that surrounded the epidemic during the eighties don’t exist anymore.

Yet, HIV/AIDS can still be a serious problem today, if people do not protect their health.

understand that with sex comes responsibility. For a moment, Rivera puts himself in the shoes of a parent. He explains that if he had children, he’d love them to be abstinent until they are married, but he wouldn’t expect it. What he would expect is for them to make the right decisions, when it comes the right time to become sexually active; to protect themselves, and not take it as a joke or consider someone who does practice safer sex as weak, because it’s actually the other way around.

In order to stay protected, one has to get tested on a regular basis. “I can tell you from personal experience,” Rivera confesses, “going back to your earlier question about my [HIV] status, there was one point in time that I was scared to death that I was positive, not because of my parents, because I knew at a young age that I was negative.

[But] things did happen in my life [when I was younger], and I remember getting tested and I said, you know what, how am I going to be able to look at myself, knowing that I have parents who’re infected by this disease, and I got out and got infected

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myself? I remember that fear of me getting tested, and I never want to have that fear again in my life. So, to me, the message is simple: Know your status, get tested, be aware, and be responsible. If people get in the habit of getting tested, that fear is a good thing, because if they are doing the right thing, when [it comes time to get] tested, it’s a breeze, there’s no problem.”

HIV education and awareness are vital in keeping oneself safe from the virus.

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“That’s what we’re trying to do through Bailando Por Una Causa,” Rivera says, raise HIV awareness and also educate about HIV/AIDS through dance. “That’s all we can do right now,” he comments.

“Whether it’s salsa, tango or rumba, dance in general is such an important part of the Latino culture, of our identity. Dance is the honey to attract the bees, the language to connect with people. That’s why we feel that Bailando Por Una Causa is such a big

platform to create [HIV] awareness.”

Learn more about the Latino Commission on AIDS at: www.latinoaids.org. Visit Baila Society on-line at www.bailasociety.com and check out a few on-line dance classes, at www.bailasociety.tv.

Find out more about Baila Por Una Causa at www.bailandoporunacausa.org.

Alina Oswald interviewed former NFL player and activist Wade Davis for the July issue.

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KEEPING THE FAITH Once “Ex-Gay,” Now Openly Gay HIV Educator Dontá Morrison Strives to Inspire More Inclusion in Churches

by Stevie St. John Photographed Exclusively for A&U

by Sean Black

I

f people were more affirmed, they would do everything possible to have the healthiest life possible. That’s what Dontá (pronounced Dante) Morrison, forty-three, believes, and that’s why he works to affirm, educate and enlighten.

An HIV educator by trade and by passion, Morrison hopes to inspire young gay and bisexual men to make healthy decisions. And he strives to sway ministers to take a more inclusive view toward LGBT people and to get involved in the fight against HIV. Morrison’s work is deeply personal.

Not only is he a gay, HIV-positive person of faith but he has been profoundly affected by the stigma he fights. In fact, it drove him to denounce his homosexuality and identify for some five years as ex-gay.

In the spheres of faith and family, sexuality was a difficult topic from early on. He loved the church but felt that love was unrequited.

“I—like so many black gay men—grew up in a traditional church system that demonized our natural desires for men. Having that ingrained into your psyche can be extremely painful to live with,” Morrison said. “I always felt like the outcast because of my sexual orientation.”

Meanwhile, Morrison being gay was an open secret in his family. He came out to his mother in the mid-nineties, and she “dealt with it,” but beyond that his relatives never spoke of it. They knew, but it was treated as taboo.

In 1999, Morrison, then a white-collar worker, got tested as a matter of course.

Just a routine HIV test. When he was told he was HIV-negative, life went on as usual. Until one day, at work, his phone rang. There had been a mistake; he was HIV-positive. He began to cry at his desk.

Though savvy enough to get tested, Morrison lacked a sophisticated understanding of the results. He perceived HIV as “this virus of death.”

Morrison’s long-term relationship dis-

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solved. He slipped into serious depression for about two years. He felt as though God had abandoned him. And that led to his “heterosexual phase.” He immersed himself in religion and began dating women.

“It was a weird space to be in because I had so many gay friends whom I loved and cherished dearly but no longer associated with. I separated myself from anything ‘gay’ and vowed to never return to that way

of living, which lead to a severe feeling of loneliness,” Morrison says.

Many of Morrison’s gay friends began to interact with him differently; they treated him in ways he found hateful. He found the way they derided his new identity off-putting. At the same time, he spent time with some other “ex-gay” men who clearly had not become straight.

“A lot of them associated celibacy and A&U • SEPTEMBER 2015

abstinence with deliverance,” Morrison recalled. “I would often ask, ‘If the opportunity to have sex came up, who would you do it with—a man or a woman?’ Many would answer ‘a man’ and go on to explain that God was still working on them.” Many of the “exgay” men married to women were unfaithful, engaging in sex or phone sex with men.

“I actually fell in love with a man during my ex-gay phase,” Morrison said. “It was a tough pill to swallow, and I was angry at myself for allowing my heart to go there, but what could I do? I began to talk to God and get true and honest answers about myself….Once I was affirmed within myself, I began to live in my truth. I began to walk from a place of assurance, unfettered by the opinions of those who said I let God down.”

Today, Morrison works at AIDS Project Los Angeles (APLA), where he coordinates an HIV awareness program for young gay men. When he was growing up, he says, he lacked guidance and role models. Consequently, he engaged in risky behaviors. He lacked a sounding board, and as a result he allowed himself to go through a lot of pain he might have avoided. Now he strives to be such a sounding board for others.

His experiences in “ex-gay” circles built bridges in faith communities. And though his faith has evolved, it has not faded. Morrison is on the path to being ordained as a minister, and—outside of his capacity at APLA—he educates pastors on LGBT cultural competency. He encourages them to SEPTEMBER 2015 • A&U

be inclusive, to use appropriate language, and to avoid anti-LGBT slurs.

Pastors who need counsel on avoiding slurs might seem unlikely to seek out such knowledge, or to enlist in the fight against HIV. But during his “heterosexual phase,” Morrison gained allies. People who knew him first as “straight Dontá” and then as his authentic self, gay Dontá, had to take a step back and look at how they treated LGBT people.

“I made them accountable for that,” he says, and those who knew personally could vouch for him to others. “It was like I was kind of a mole for five or six years.”

Being a mole, even an unintentional one, taught Morrison a lot. And his experiences have given him an unusual vantage point on LGBT people, people of faith, and how they sometimes see one another.

“I wish there were compassion on both sides. Ex-gay men are living their lives in a manner that works best for them and [so are] gay men. Both sides need to understand that all of us have our own road to travel, and just because you don’t understand it doesn’t mean it’s wrong,” he says.

That doesn’t mean Morrison doesn’t see ways he would like to see anti-LGBT churches change.

“I discovered that the church needs to be educated in human sexuality. It is not as black and white as they believe it to be,” he shares. “I learned that my being gay was only a huge factor to the church, not to

Fellow actors and friends Dontá and Spencer M. Collins IV God. A great deal of Christians do not study the Bible in full and operate from a passed down understanding steeped in traditions and not facts. Many Christians are taught that homosexuality is wrong and refuse to hear anything that may deter that belief. It is a very sad state of mind to be in because God is much bigger than the Bible….

“If persons of faith would operate in unconditional love and affirm LGBT persons, we would see healthier attitudes and choices made by those who feel unloved by both church and God. If a person feels valued, they will more than likely make better sex-related decisions, which can lead in a decreased number of new HIV infections.

The church needs to get fully involved in the fight against HIV and support all at-risk populations, not just the ones who fit their belief system.”

In addition to Morrison’s work with APLA and his work in faith communities, he has written two fiction books inspired by his real-life experiences.

To learn more about Dontá Morrison, log on to: www.dontamorrison.com.

Stevie St. John is an assistant editor at Brief Media, a veterinary medical publishing company based in Tulsa, Okla. Her byline has appeared in many LGBT publications.

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ESCAPE SURVIVAL to

Magician, escape artist, HIV activist and survivor Daniel Bauer unveils the magic of making a cure appear Text & Photos by Alina Oswald

W

hile many may believe in magic, many more may doubt its infinite powers. This past summer, I found myself facing Daniel Bauer, magician, motivational speaker, and also HIV activist and survivor.

We debated the magic of finding a cure for HIV, in his apartment, over a platter of cheese and grapes, and a glass of iced tea.

Daniel Bauer is a fascinating and complex human being who, today, is reclaiming his dream of becoming an escape artist, and a Houdini successor. From the young age of eight, Bauer knew that he wanted to become a magician, when his parents gave him a magic kit. “It was love at first sight,” the now forty-two-year-old magician tells me.

In 1998, he left his parents’ home in Poughkeepsie, to move to New York City.

Between 2000 and 2002, his career started to flourish. He got his first off-Broadway show, and made it on the cover of HX Magazine. He was about to start a new show called Piranha Peril, which was going to establish his legacy and capture the essence of an escape artist—that is, like Harry Houdini, to risk his life and create an escape from the ordinary for those watching him, so that they would forget about their problems, if only for a few moments.

A huge media event was organized to

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introduce his new show and launch Bauer as the successor of Houdini. And Daniel Bauer found himself on the verge of being on top of the world. But then everything was pulled out from underneath him.

Around that time, his boyfriend—the only man Bauer had trusted—packed up and left. Bauer had to get tested for insurance purposes for the show. The test results came back revealing that he had contracted HIV. At the time only a handful of people knew about it, but they were the ones controlling his career path, and they refused to continue funding his show.

In a quick series of events, Bauer lost everything and was also abandoned by his family, as a result of his HIV status. And so he completely gave up on himself.

There were many nights when he wanted to numb the pain and feel nothing at all. He recalls one of those nights, when he went out to a nightclub, where he got introduced to several drugs. One of these drugs, crystal meth, stayed with him for an entire year. “I smoked my entire life away,” Bauer says, explaining that meth makes you think that you’re the greatest thing in the world, but day by day, while on meth, you’re losing your entire world—he got evicted, and had to live on the streets for a brief time. And then he received what he calls a “forced intervention.”

He had gone back to see his parents,

but hid in their basement, hoping to eventually show himself and ask for a second chance. But one night he woke up to state troopers and their dogs. The last words he heard from his father were, “Never come back.”

After that intervention Bauer got his life back together. He went through rehab, graduated, and got his first job.

Then he became the marketing guy for the mayor of Albany, New York, and was put in charge of raising millions of dollars for city-sponsored events.

Today, Daniel Bauer is not the same person he used to be back in the day. “I love to motivate young people to never give up,” he says, “because I had a redefining moment in my life the night that I tried to take my life.” And he shows me the scars on his wrists when he attempted suicide.

“Nobody knows the story,” he begins, and then pauses for a moment, as if reflecting on what he was about to say next.

“My baby brother had also been diagnosed with HIV,” he finally continues, pointing at a picture of his brother. “He was diagnosed in 1989, I believe, and passed away from AIDS-related complications.”

Bauer’s brother, Andy, had such a bad reaction to AZT that he stopped taking it, and refused to go on any other medication from fear of having the same side effects.

He called Bauer from Beth Israel HospiA&U • SEPTEMBER 2015

tal in New York City. He was at the end, battling PCP, getting to that point where he couldn’t breathe on his own anymore.

Doctors were going to intubate him. So, he begged his older brother to come down and stop them from doing that, because he wanted to die.

Bauer falls silent for several moments then shakes his head. “I was too late,” he finally says. “I got there, and they’d already intubated him.”

Doctors could not reach Bauer’s family, and Daniel couldn’t make any decisions about his brother without his parents’ consent. When they finally got his mother on the phone, she told them that he could do whatever he wanted. “So we had the tubes removed,” he says, “and they doped him SEPTEMBER 2015 • A&U

up on morphine as much as possible, and then [we] waited out until he took his last breath.” Andy died on October 9, 2010, in the afternoon. He was thirty-five years old.

The experience sent Bauer into a deep depression. He had stopped taking his Atripla, because he was experiencing horrendous side effects. He thought he was going to die, too. And so he tried to take his own life. Luckily, a friend found him before he bled out.

Bauer became a motivational speaker because he knew that he didn’t want any other person to feel the hurt and pain that he’d gone through, but, rather, to feel that, if they made mistakes at some point in their lives, they could pick themselves up and move forward.

Later that same year, in 2011, Bauer received a phone call from Staten Island Technical High School. They wanted him to speak to their students on World AIDS Day. He’s been speaking at the event each year, ever since.

Bauer speaks at high schools across the country, to thousands of students. One year he was back at another high school, and had just finished speaking, when a student came up to him and hugged him, as a tear started coming down his cheek.

He wanted to thank Bauer for saving his life. “When you came to this school a couple of years ago,” Bauer remembers the student say, “I was ready to end my life, and because of you, today I am the captain of my wrestling team, and I am happy.”

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And stories like this happen every time someone, student or not, hears Bauer speak.

Yet, Bauer doesn’t consider himself an HIV activist, but rather a motivational speaker. “I have a greater impact getting into schools and making sure these kids, when they get silly with their willy, they wrap it up,” he explains. “I desperately think that our world is missing magic today,” Bauer adds. “I think everybody is beating up on each other, [and] I think there’s a better way to treat each other [and] bring the magic out in people.”

And Bauer does just that, through his profoundly inspiring and enlightening speeches, during which he candidly shares his own life story, his experience with HIV, and mental health related to living with HIV. He explains that there’s a mental shift that comes with an HIV diagnosis, with being abandoned, rejected, and feeling not worthy of anybody’s love. Over the years he has learned to deal with his HIV and depression.

Nowadays, he’s teaching others to do the same, because, he explains, he might not be perfect, but he refuses to be knocked down, because, he says, “it took a very long time for me to get comfortable in my own skin, to stitch a new set of armor.”

Nowadays, one cannot mention HIV without bringing up the topic of PrEP. So I have to know what Bauer has to say about that. And his answer is an eye-opener. “Maybe we need to change behaviors, instead of relying on a pill to solve all our problems,” Bauer says, explaining that preventing HIV is more about having the discipline to take the SEPTEMBER 2015 • A&U

pill every single day, put on a condom, get tested on a regular basis. “If [not],” he opens his arms, “I’m living proof of the consequences.”

And then he adds, as if addressing the students, “If you don’t want to have [that kind of ] discipline, you [can get HIV].

And then you need to find [the money] for your HIV treatment, and for the related depression, because everybody I know living with the virus went through depressive moments—self-grieving, denial, and anger. You are going through it all, so get ready! You have to go to the doctor every three months and have your blood checked, worry about your employer finding out [about your status] or of being criminalized. And if you’re not taking your medication, you can end up in the hospital or dead, like my brother....You can have [all that] or you could be a cool dude and have some discipline.” He pauses, and then his face opens up in a broad smile, “The kids love to hear it that way,” he explains.

While Bauer is, after all, a magician, and while we’re discussing HIV and AIDS, I wonder about the magic of making the virus disappear. When it comes to fighting HIV/AIDS, Bauer believes that we are fighting two wars—finding a cure for the actual virus, and also for the related stigma. And he might just have a solution for both.

Bauer has had the honor to moderate a panel at an International AIDS Conference, where he got to meet scientists, and also notice that they do not really share their findings with their peers. So he proposes a “think tank,” in which scientists could spend a short time to share the good and the bad of their research studies.

He believes the reason we’re still lacking a cure is a lack of communication. “If we want a cure,” he says, “we have to start having a conversation about how we are going to achieve that together, worldwide.”

In order to cure stigma, Bauer encourages those in the HIV community “to stop being afraid of our own virus, and stand tall on our own two feet. Then [others] will stop being afraid [of the virus, too].” Bauer has seen this transformation. When giving speeches in high schools, some people are afraid of him, at first, and then after his

speech, they wouldn’t leave without a hug, a handshake, or taking a selfie with him.

“So now that I revealed the secrets [of finding a cure for HIV], we need to let the magic happen,” he says with a smile. And Bauer does just that, through his motivational speeches, and also through his new show, Beyond Belief: Escape to Survival, which he hopes to bring to audiences soon.

These days, Daniel Bauer has a new perspective on life, and also an apology. “I hurt some people in the HIV community,” he confesses. “I think we all would be foolish to say that we haven’t hurt some-

body at one point in our lives. But I think it’s important for us to take ownership in our mistakes, and to find pride in our very present moment, so that we can have a better tomorrow.”

He advises those living with HIV and depression to find the magic in their lives.

“It is not going to be an easy road,” he says, “but when the first glimmer of sunshine pops through the fog [of depression], it is the most amazing transformation that people will ever experience. So, go for the sunshine. Your life matters.”

To find out more about Daniel Bauer, inquire about speaking engagements or check out tickets for his new show, Beyond Belief, please visit www.danielbauer.us.

Alina Oswald wrote about the new Larry Kramer documentary in the August issue.

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Ending Disparities

A

s the United States Conference on AIDS (USCA 2015) will convene shortly (September 10–13) in Washington, D.C.—and its theme is “The Numbers Don’t Lie: It’s Time to End Disparities!”—it might be a good idea to preview some of those disparities when it comes to access to care and treatment.

To understand disparities in general, let’s look at the HIV care continuum. As AIDS.gov defines the continuum, it’s the “series of steps a person with HIV takes from initial diagnosis through their successful treatment with HIV medication.” The five steps include being tested and diagnosed, linked to care, engaged or retained in care, prescribed antiretroviral medicine, and achieving viral suppression.

According to updated 2015 CDC numbers, 1.2 million individuals are living with HIV in the U.S., with about 50,000 new infections occurring every year. Looking at the HIV care continuum, only eighty-six percent of these individuals are diagnosed.

Eighty percent have been linked to care.

Forty percent are engaged in care. Thirty-seven percent have been prescribed antiretroviral medications. And thirty percent are virally suppressed.

The optimal goal for the the best health outcomes is lowering one’s viral load and, if possible, achieving viral suppression. So the question becomes: How do we stop the cascade—the series of drop-offs in numbers along the care continuum? How do we engage individuals so that they test and then engage in care? And how do we engage in care the sixty-six percent of individuals (roughly three-quarters of 1 million individuals) who are diagnosed but not in care?

One approach is to tackle what prevents people from engaging in all the steps along the continuum. Barriers to care that create the disparities include systemic inequities fueld by homophobia, racism, sexism, discrimination, criminalization, and domestic abuse, among others.

Two of the most pernicious social drivers are racism and homophobia, and when they intersect, such as in the case

54

of Black gay and bisexual men, the healthcare outcomes are life-threatening.

According to an amfAR February 2015 issue brief, “HIV and the Black Community: Do #Black(Gay) Lives Matter?” while Black gay men represent only .2 percent of the U.S. population, they represent twenty-three percent of new infections in the U.S. While an overwhelming majority of African Americans (ninety-eight percent) are HIV-negative, only sixty-eight percent of Black gay men are negative. So, one in three Black gay men are HIV-positive, according to estimates.

The report argued that one way to improve linking Black gay men to care is to provide more targeted outreach.

Department of Health and Human Services prevention programs could be doing a much better job at targeting Black gay men. Between fiscal years 2009 and 2011, the programs providing services to Black Americans aimed sixty percent of prevention services at heterosexual women, forty-five at heterosexual men, and thirty-nine percent at gay men (with some outreach focused on more than one population). Researchers pointed out that the level of outreach should match the rate of infections.

“This under-prioritization continues at the agency level,” the report continues.

“A recent systematic review of funded primary HIV prevention interventions for youth from 1991 to 2010 found that only five interventions focused on gay and bisexual men, and none focused on young Black gay men. And the CDC’s Compendium of Effective Behavioral Interventions has only two of 84 behavioral interventions that focus specifically on Black gay men, only one of ten linkage and re-engagement in care interventions that focus upon Black or Latino gay men, and none of ten HIV medication adher-

ence interventions that focus on Black gay men.”

But the scarcity of public-health interventions was only one reason why Black gay men are not making significant headway along the HIV care continuum.

The report also pointed to a lack of social support, homelessness, and less access to healthcare (or substandard and/or discriminatory healthcare) as factors that contribute to this overall barrier to decreasing HIV infection risk and improving health outcomes for Black gay men.

The result is that only sixteen percent of Black gay men living with HIV are virally suppressed nationwide. Compare this to twenty-eight percent of Black Americans who are virally suppressed, and thirty percent of HIV-positive individuals in care as a whole. That’s about half of a number that is not too high to begin with.

This example of disparity is only one among many, and USCA will bring together experts across various fields to weigh in on what we can do to shrink the gap between diagnosis and linkage to care and viral suppression.

For more information about USCA, log on to: www.2015usca.org.

Chael Needle wrote about AIDS-related OIs and rates of survival in the July issue.

A&U • SEPTEMBER 2015

illustration by Timothy J. Haines

u.s. conference on aids shines a light on hiv health inequities

AUGUST 2015 • A&U

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lifeguide

VA’s HEP Crisis the department of veteran affairs outsources & rations hep c treatment

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he newest class of antiretroviral drugs has sparked a revolution in the treatment of hepatitis C, but for the Department of Veterans Affairs, this success has come with big challenges.

While the VA contends that the new drugs have cured as many HCV patients in the past fifteen months as the old regimens cured during the previous fifteen years, demand for the meds has surged and is leading to an enormous budget shortfall.

That shortfall could be more than $2.5 billion, the VA said in June, and although not all of it is due to unanticipated demand for life-saving hep C meds, hepatitis C treatment has been responsible for most of the gap.

Although the new antiretroviral drugs are being sold to the VA at a discount, at $600 per dose, VA officials had severely under-budgeted treatment because they didn’t know exactly what the new drugs would cost.

They contend that because VA’s budget is set about a year in advance, they were not able to set an accurate price for the meds, which include sofosbuvir, approved in late 2013 under the brand names Sovaldi and later as Harvoni.

The VA’s response, starting in May, was to shift some of its hepatitis C patients to private providers to cut costs. Selected patients will be offloaded to the new Veterans Choice Program, a $10 billion program created to help reduce wait times for treatment by letting veterans seek care from providers outside the VA system.

The shift to private providers through the VA’s Choice Plan helps the VA to pay for hepatitis meds with bailout money from the Veterans Access, Choice and Accountability Act, a $16.3 billion funding and reform measure passed last year.

About $10 billion of that money was earmarked for private care, but the Choice Plan has largely been untapped.

The money was intended to ease the

56

backlog of veteran appointments for healthcare. But the decision to use it to offset the cost of hepatitis meds was not part of the original plan. Under the new plan, hepatitis C patients who already started treatment in the VA system will be allowed to remain there, but facilities that can’t afford to buy the drugs for new patients will now refer them to the Choice Program.

In addition, the VA has asked Congress for authority to pull up to $500 million from the Choice Program in the current fiscal year specifically to pay for hepatitis C medications for patients receiving care within VA facilities.

VA responded to critics of the controversial move saying it’s a temporary solution until the beginning of the next fiscal year and that it had no choice in order to treat vets with hepatitis C and stay in the black.

“It is essential that Congress pass legislation to provide the requested budget flexibility by the end of July 2015,” VA Deputy Secretary Sloan Gibson wrote.

“This is necessary to replenish critical operations funding that VA had to reallocate from other medical services programs to sustain Care in the Community, after those funds were depleted. If these program funds are not restored, VA will face shutting down hospital operations during August 2015.”

The VA also established new criteria for who can receive the latest hepatitis C

meds. Patients with advanced—but not end-stage—liver disease get priority, but those with a life expectancy of less than a year or who have a strain of hepatitis resistant to antiviral drugs will not be eligible for treatment.

The new measures are drawing criticism from veterans advocates, including Tom Berger, executive director of the Veterans Health Council at the Vietnam Veterans of America. In an op-ed in the Congressional watch publication “The Hill,” Berger called on Congress to allocate more funds immediately for hep C care and demanded that the VA not ration care. In other publications Berger has said offloading some hep C patients onto the Choice program will worsen, not improve, wait times.

The New York Times reported in June that the wait times for care at VA facilities were fifty percent higher than in June, 2014, at the height of the Administration’s problems.

The VA estimates that 180,000 U.S. patients are being treated for hepatitis C through the Administration and that the majority of them contracted it during their service in the Vietnam War. Hepatitis C is far more common among Vietnam-era veterans than younger veterans due to transfusions and blood contact in combat and training. While one in ten veterans overall have the infection— still higher than the general population— more than six in ten Vietnam veterans have the infection. According to internal records, about 3,000 veterans died in VA care in 2014 from complications brought by hepatitis C. Larry Buhl is a radio news reporter, screenwriter, and novelist living in Los Angeles. His podcast on employment issues, “Labor Pains,” can be found at www.laborpainspodcast.com.

A&U • SEPTEMBER 2015

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lifeguide

Meridians of Health

A

cupuncture is an Eastern healing modality that is said to have originated some 2,500 years ago. It falls under the umbrella of Traditional Chinese Medicine. While it originated in China, it is now widely practiced in the West. Very simply put, acupuncture is a form of complementary and alternative medicine that involves inserting thin needles into the skin, or pricking the skin or tissues with needles, to alleviate pain or to treat various physical, mental, and emotional conditions. But how does it work and why do people living with HIV sometimes look to acupuncture as a complementary therapy?

The short answer is a small word with a vast meaning: qi.

Qi, typically pronounced “chee,” can be a little hard to explain, but generally speaking, qi is energy or your life force. In Traditional Chinese Medicine, it is believed that qi travels through our bodies along specific, energetic pathways, called meridians, nurturing and nourishing the mind, the spirit, and the body. The needles used in acupuncture are meant to stimulate specific points that lie along these meridians, thus improving the flow of qi along the meridians. When qi flows steadily and evenly, and with balance, the body can enjoy a state of good health. When there is an imbalance of qi or there is a blockage preventing the smooth flow of it, it can cause pain, pathology, and dysfunction.

I like to think about the flow of qi and the role it plays in more practical, everyday terms to make something somewhat abstract slightly more tangible. Picture the water that flows through a river as qi. If there was a blockage in the river, preventing a smooth flow of water, what might occur? If you were to step back and look at the river from one end to the other, what might you see? The level of water will swell on one side of the river and diminish on the other. One end of the river may overflow and flood, perhaps damaging the areas surrounding it due to an excess of water. Yet, on the other side, the water levels are depleted; the very water that feeds and nourishes the area around it. What happens to the side of the river that is no longer receiving the water? It is deprived.

It becomes deficient. The qi that flows

58

through our bodies via meridians is much the same as the water in that river. A blockage, an imbalance, or an excess or deficiency can have a negative impact anywhere along the path.

According to the AIDS InfoNet, because acupuncture deals with energy balance, there are not specific acupuncture points used to treat HIV. Instead, your acupuncturist will use your pulses and will probably look at your tongue, to find out how your energy flows are out of balance. Many people believe that it helps to improve their overall energy and helps to manage the side effects associated with antiretroviral medications. Some people have used acupuncture to reduce upset stomach or diarrhea caused by their medications. Other people find that it helps ease the pain caused by neuropathy. Since the 1980s, Traditional Chinese Medicine has been used to help alleviate a variety of side effects and symptoms such as muscle pain, sore throats, fatigue, headaches, nausea, vomiting, insomnia, night sweats, swollen lymph glands, stress, and anxiety.

It is believed that acupuncture can help in increasing immunity by raising endorphin levels, the number of antibodies, and white blood cell levels. Short-term benefits, such as increased energy levels, improved sense of well-being and weight gain, are also experienced by many who use acupuncture.

Based on your particular energetic imbalances, your acupuncturist will determine which points along a meridian or meridians to stimulate. Needles will be inserted at those points. Some practitioners may employ additional techniques to increase the flow of qi. Again, according to the AIDS InfoNet, the needles might be stimulated with a very mild electric current. This is called electroacupuncture.

Moxibustion is another possibility. Moxa is soft material prepared from dried mug-

wort, an herb. Moxa may be put on the top end of acupuncture needles or (rarely) right on the skin. Moxa is burned to provide penetrating heat. A practice called cupping may also be used. Round glass cups can be used to create suction over specific points. The suction stimulates the flow of energy.

In my personal experience, I have left acupuncture treatment sessions with techniques intended to work over time.

In some instances, an acupuncturist may use small beads or tiny needles held in place with adhesive to keep pressure on an acupuncture point for a few days.

As always, when considering the addition of any form of complementary or alternative medical treatment it is important to speak to your doctor first.

In addition, it is important to provide a complete and complex medical history to your acupuncturist. For example, there are some points on the body that should not be stimulated during pregnancy. To avoid any contraindications, always provide an excess of medical information to your practitioners when seeking out complementary or alternative medical treatments.

After a lengthy career in the arts and LGBT activism, Robert Zukowski pursued his goal of a career in complementary and alternative healthcare. He is a New York State licensed Massage Therapist, a Certified Medical Massage Therapist and is certified by the National Certification Board for Therapeutic Massage and Bodywork. In addition to his hands-on work, he is a writer and lecturer in the field of therapeutic massage therapy.

A&U • SEPTEMBER 2015

illustration by Timothy J. Haines

a short intro to acupuncture & hiv

AUGUST 2015 • A&U

59

E R U CULT S THE

While many books offer various accounts of the history of AIDS, none so far has really taken a closer look at the AIDS crisis as seen mainly through a religious prism. In his first book, and the first book of its kind, After the Wrath of God: AIDS, Sexuality, and American Religion, Anthony M. Petro, who is assistant professor of religion at Boston University, attempts to shed some light on the subject of AIDS as God’s wrath.

But don’t expect a post-apocalyptic read on AIDS as a punishment from

AID OF

BOOKS Visions and Revisions Coming of Age in the Age of AIDS Dale Peck Soho Press

A

cclaimed author Dale Peck looks back on his young adulthood in Visions and Revisions. Living in New York City in the late eighties/early nineties, he was indeed, as his subtitle indicates, “coming of age in the age of AIDS.” During these years, when people sickened and died in large numbers without effective treatments, Peck was attending graduate school, writing, coming out as a gay man, and volunteering for ACT UP. His book on this time is a series of riffs, memories, and observations, often in melancholy tones.

The severity and urgency of what was then termed the “AIDS Crisis” dominates as Peck touches on personal relationships, his activism, his sex life, and events and culture of the era. Peck also notes seminal articles and commentary important to the time along with some of the theoretical academic work that emerged on the existential implications of HIV. Peck is an illuminating commentator, but the work can be frustrating at times.

It is broken into longish untitled sections; issues flicker and swirl throughout the work, coming up briefly, recurring later. It is refreshing to see a look back that is not a conventional memoir dependent on a narrative arc. But too often Peck provides too little background, context, or description for a real purchase on particular subjects.

A bit more thought to readers, especially those unfamiliar with this period, would

60

have been welcome. These concerns aside, Peck has provided an intimate sense of a life and consciousness formed during years of epidemic and activism. The work ends with Peck moving to a more literary mode, from fluid, informative prose to more artful prose and one poem in “Thirteen Ecstasies of the Soul.” Short pieces affectingly detail a relationship, an illness, a death, and going on after this death.

—Nancy Ellegate

After the Wrath of God: AIDS, Sexuality, and American Religion Anthony M. Petro Oxford University Press

G

RID, slim disease, plague, God’s punishment...for almost thirty-five years, the AIDS epidemic has been called many names meant to reflect various facets of life affected by the disease itself. Some names target certain communities; others are meant to instill fear, even panic. Of all these names, “punishment from God” may resonate the strongest with most individuals, believers as well as non-believers. After all, who’d want to be the target of God’s punishment, for any reason?

God, because After the Wrath of God is no such thing. Rather, it’s an in-depth documentation of the history of the epidemic in the U.S., seen through the eyes of various Christian religious denominations. The book also takes into account opinions from both sides of the aisle, from the Religious Right to ACT UP. Also, in After the Wrath of God, the author doesn’t stop at the AIDS epidemic, but further discusses topics such as homosexuality, marriage equality, as well as abstinence and monogamy, and their role in shaping the epidemic.

After the Wrath of God is neither a summer read nor for just anybody.

Rather than explaining why or if AIDS is indeed God’s punishment or what would happen after God’s wrath, the book focuses on the hope, and the role of religion, in winning the fight against AIDS. After the Wrath of God shows, ultimately, that sometimes opposing religious, activist, and political views can converge A&U • SEPTEMBER 2015

to help us work together to achieve a greater good—in this case, to stop the ongoing AIDS epidemic.

—Alina Oswald

unusual take on the pandemic, in a blueprint of living life to the fullest, while living with the virus. Thorn, who, in 2014, was nominated Journalist of the Year by Stonewall, dedicates his book to his friend, Glenn Thomas, whose life ended just over a year ago, on July 17, 2014, when he was traveling to the International AIDS Conference in Melbourne and Malaysian flight MH17 was shot down from the sky over eastern Ukraine.

HIV Happy offers a short and to-thepoint, brutally honest yet much needed self-help read, in which the author shares his own experience of living with the virus, and details, with much clarity, the five pillars of living HIV happy: health and self, relation-

Double Life Kathey Norton BookBaby

C

an we run away from our past? Can we hide in the closets of our lives forever?

Can we lead a double life?

And if so, for how long, at what price, and, most importantly, who’s going to pay that price?

These are only a few of the questions the lead character in Kathey Norton’s new novel, Double Life, has to answer, when the past he tries so desperately to keep secret, finally catches up with him, affecting not only his own life, but also the lives of his loved ones. Double Life tells the twisted, and, at times, heartwrenching story of Richard Maxwell, a gay teenager who, disowned by his parents, ends up in San Francisco, in the company of Sean Montero, a male prostitute. It is the seventies, and, while Richard learns the tricks of the trade, he also learns to live openly and proudly, as a young gay man. He also falls for the daughter of a very wealthy man living in the City by the Bay. Soon, Richard finds himself stuck, unable to choose between two worlds—one of the privileges that come with money and wealth, and an adventurous, sometimes risk-taking life that accepts him for who he is, and allows him to be his true self. And his inability to choose between the two worlds forces him to lead a double life, and hide a past that is threatened to be exposed by the beginning of the AIDS epidemic.

While the story told in Double Life is not a new one, it is an important one, sometimes happening in real, present life, for reasons that surpass hiding one’s past or sexual orientation. Double Life helps us take that second look at our own lives, and reconsider the choices we are about to make. Most significantly, the message that comes through in this entertaining read is the importance of being true and honest not only to loved ones, but, mostly, to oneself.

The quote by author Robert Louis SEPTEMBER 2015 • A&U

Stevenson included at the beginning of the book sums up this message quite perfectly: “To know what you prefer, instead of humbly saying Amen to what the world tells you you ought to prefer, is to have kept your soul alive.”

—A.O.

HIV Happy

by Paul Thorn CreateSpace Independent Publishing Platform

T

he AIDS pandemic is only one year shy of turning thirty-five.

During all this time, we’ve read many, many stories inspired by the virus that started the pandemic, and also by those living with the virus. Stories often capture a wide range of emotions associated with HIV and AIDS— from suffering and loss, to success and victories against the virus—sketching out in a seemingly infinite of ways, the ongoing epidemic and the ever-changing face of the disease itself. Through it all, maybe one idea has remained constant—that life, or life as we know it, can, indeed, end in an instant.

Maybe this very thought triggered the idea for Paul Thorn’s new book, HIV Happy, in which the author offers a surprising and

ships, home, work, and finances.

We all need these five pillars in our lives, regardless of our HIV status. In that sense, HIV Happy reaches many of us—HIV-positive or not—on a personal level, daring to touch on issues we often hesitate to talk about, such as living with low self-esteem or dealing with the curve balls life throws our way, and helps us recognize our second chances and make the best of them, in order to live happy, and full lives.

“Happiness comes from being grateful for what we have already in our lives and acknowledging it. We so often take what we have for granted.” Thorn writes in HIV Happy. “[I]t isn’t about reaching up for something, but simply reaching out.”

Contact Paul Thorn at: www.thornwrites.co.uk.

—A.O. Nancy Ellegate is a sometime book reviewer for A&U. Alina Oswald is Arts Editor of A&U.

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A S

A O

A Calendar of Events

M

ary Wilson of The Supremes will bring her Motown musical magic to the annual Jeannette Rockefeller Angel Program Kickoff Party benefiting AIDS Assistance Program–Food Samaritans (AAP). Along with a chance to support vital nutritional services, attendees will enjoy the scenic views of surrounding mountain ranges, beautiful and fragrant botanical gardens, and classic architecture at a 1920s artist colony-turned-exclusive retreat. The event, which is considered the unofficial start of the desert’s season of giving, will also offer cocktails, delectable hors d’oeuvres, and valet parking.

AAP improves the quality of life for more than 500 clients living with HIV/AIDS in the greater Palm Springs area, who receive food vouchers from the nonprofit every month.

In 2016, AAP will expand its services to individuals living with chronic illnesses besides HIV/AIDS. AAP does not rely on any federal or state funding, so your donations are the

62

lifeblood of the organization.

All funds raised at the event will go toward the food voucher program.

The Wells Fargo Foundation is providing a matching grant in support of the annual fundraising drive in the amount of $75,000.

Date: October 11; time: 6–8 p.m.; location: Colony 29, Palm Springs, California; tickets: free (attendance indicates an intention to participate in AAP’s Annual Giving Program).

For more information, log on to: aidsassistance.org.

A&U • SEPTEMBER 2015

SEPTEMBER 2015 • A&U

63

Survival Guide

[a portrait by sean black]

Phill Wilson, with Puck Los Angeles, California

President and CEO of the Black AIDS Institute, Wilson co-founded important organizations, including the National Black Lesbian and Gay Leadership Forum, the National Task Force on AIDS Prevention, and the National Minority AIDS Council.

“I believe Black Lives Matter because I believe all lives matter. Every time we allow any life to be diminished we undermine the integrity of all of our lives. And, if Black lives matter, they have to matter long before we lie face down dead in the street at the hands of a policeman.

The achievement gap between Black boys and other boys has to matter. The school-to-prison pipeline for Black children has to matter. The high unemployment rate of Black teenagers has to matter, and the high rates of HIV/AIDS among young Black Gay men has to matter.”

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

A&U • SEPTEMBER 2015

HIV TREATMENT CAN GET YOUR VIRAL LOAD SO LOW, IT’S UNDETECTABLE. GO FOR UNDETECTABLE.

There is no cure for HIV, but being undetectable helps protect your health. See how. Watch “The Goal of Undetectable” at HelpStopTheVirus.com © 2015 Gilead Sciences, Inc. All rights reserved. UNBC1853 03/15