A&U April 2016 (Teddy & Milissa Sears)

APRIL 2016 • ISSUE 258 • AMERICA’S AIDS MAGAZINE

Sharing Our Stories

Honoring Our Experience • Life Group LA • Latresa Rice • Hugh Steers • Women’s HIV Program • Maitri • Sherri Lewis

Teddy & Milissa

sears

THE ACTING DUO GAINS TRACTION IN THE FIGHT AGAINST AIDS

WHAT IS GENVOYA®?

GENVOYA is a 1-pill, once-a-day prescription medicine used to treat HIV-1 in people 12 years and older. It can either be used in people who are starting HIV-1 treatment and have never taken HIV-1 medicines before, or people who are replacing their current HIV-1 medicines and whose healthcare provider determines they meet certain requirements. These include having an undetectable viral load (less than 50 copies/mL) for 6 months or more on their current HIV-1 treatment. GENVOYA combines 4 medicines into 1 pill taken once a day with food.

GENVOYA is a complete HIV-1 treatment and should not be used with other HIV-1 medicines.

GENVOYA does not cure HIV-1 or AIDS. To control HIV-1 infection and decrease HIV-related illnesses, you must keep taking GENVOYA. Ask your healthcare provider if you have questions about how to reduce the risk of passing HIV-1 to others. Always practice safer sex and use condoms to lower the EJCPEG QH UGZWCN EQPVCEV YKVJ DQF[ ƃWKFU 0GXGT TGWUG QT UJCTG PGGFNGU QT QVJGT KVGOU VJCV JCXG DQF[ ƃWKFU QP VJGO

IMPORTANT SAFETY INFORMATION

What is the most important information I should know about GENVOYA? GENVOYA may 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 muscle pain, trouble breathing, stomach pain with nausea or vomiting, feeling cold (especially in your arms and legs), feeling dizzy or lightheaded, and/or a fast or irregular heartbeat.

• Serious liver problems. The liver may become large and fatty. Symptoms of liver problems include your skin or the white part of your eyes turning yellow (jaundice), dark “teacolored” 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, or have been taking GENVOYA for a long time. In some cases, lactic acidosis and serious liver problems have led to death. Call your healthcare provider right away if you have any symptoms of these conditions.

• Worsening of hepatitis B (HBV) infection. GENVOYA is not approved to treat HBV. If you have both HIV-1 and HBV and stop taking GENVOYA, your HBV may suddenly get worse. &Q PQV UVQR VCMKPI )'081;# YKVJQWV ƂTUV VCNMKPI VQ [QWT healthcare provider, as they will need to monitor your health.

Who should not take GENVOYA? Do not take GENVOYA if you take: • Certain prescription medicines for other conditions. It is important to ask your healthcare provider or pharmacist about

medicines that should not be taken with GENVOYA. Do not start a new medicine without telling your healthcare provider.

• The herbal supplement St. John’s wort.

• Any other medicines to treat HIV-1 infection.

What are the other possible side effects of GENVOYA? Serious side effects of GENVOYA may also include: • Changes in body fat, which can happen in people taking HIV-1 medicines.

• Changes in your immune system. Your immune system may IGV UVTQPIGT CPF DGIKP VQ ƂIJV KPHGEVKQPU 6GNN [QWT JGCNVJECTG provider if you have any new symptoms after you start taking GENVOYA. • Kidney problems, including kidney failure. Your healthcare provider should do blood and urine tests to check your kidneys.

If you develop new or worse kidney problems, they may tell you to stop taking GENVOYA. • Bone problems, such as bone pain, softening, or thinning, which may lead to fractures. Your healthcare provider may do tests to check your bones.

The most common side effect of GENVOYA is nausea. Tell your healthcare provider if you have any side effects that bother you or don’t go away.

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

• All the medicines you take, including prescription and overthe-counter medicines, vitamins, and herbal supplements.

Other medicines may affect how GENVOYA works. Keep a list of all your medicines and show it to your healthcare provider and pharmacist. Ask your healthcare provider if it is safe to take GENVOYA with all of your other medicines.

• If you take antacids. Take antacids at least 2 hours before or after you take GENVOYA. • If you are pregnant or plan to become pregnant. It is not known if GENVOYA can harm your unborn baby. Tell your healthcare provider if you become pregnant while taking GENVOYA. • If you are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed. HIV-1 can be passed to the baby in breast milk.

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

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

Ask your healthcare provider if GENVOYA is right for you, and visit GENVOYA.com to learn more.

GENVOYA does not cure HIV-1 or AIDS.

SHOW YOUR

POWER

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

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

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

POSSIBLE SIDE EFFECTS OF GENVOYA

Genvoya® may cause serious side effects, including:

GENVOYA can cause serious side effects, including:

• Build-up of lactic acid in your blood (lactic acidosis), which is a serious medical emergency that can lead to death. Call your healthcare provider right away if you have any of these symptoms: feeling very weak or tired, unusual muscle pain, trouble breathing, stomach pain with nausea or vomiting, feeling cold (especially in your arms and legs), feeling dizzy or lightheaded, and/or a fast or irregular heartbeat.

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

Call your healthcare provider right away if you have any of these symptoms: your skin or the white part of your eyes turns yellow (jaundice), dark “tea-colored” urine, light-colored bowel movements (stools), loss of appetite for several days or longer, nausea, and/or stomach pain.

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

You may be more likely to get lactic acidosis or severe liver problems if you are female, very overweight, or have been taking GENVOYA for a long time.

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

• Changes in body fat.

• Changes in your immune system.

• New or worse kidney problems, including kidney failure.

• Bone problems.

The most common side effect of GENVOYA is nausea.

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

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

• Have any other medical condition.

ABOUT GENVOYA

• Are pregnant or plan to become pregnant.

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

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

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

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

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

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

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

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

HOW TO TAKE GENVOYA • GENVOYA is a complete one pill, once a day HIV-1 medicine.

• Take GENVOYA with food.

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

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

GENVOYA, the GENVOYA Logo, GILEAD, and the GILEAD Logo are trademarks of Gilead Sciences, Inc., or its related companies. All other marks are the property of their respective owners.

Version date: November 2015 © 2016 Gilead Sciences, Inc. All rights reserved. GENC0020 03/16

A&U Frontdesk

Longtime Discussion

A

s we went to press, another month goes by where the political campaigns on both sides of the aisle, with few exceptions, continue to stigmatize people living with HIV/AIDS by simply not mentioning us. And yet, the number of new infections—according to the CDC—continues to exceed 50,000 per year. According to more stats just released, up to forty percent of Americans living with HIV are not receiving consistent medical care for their condition. And that’s with the Obamacare rollout pretty much complete. And the really frightening number is the one concerning Americans living with HIV—nearly one-third don’t know they’re positive!

Some would argue that the candidates for the highest office in the land have not mentioned, or were slow to mention, AIDS because it isn’t worthy of a political soundbite, that it has become relegated to the class of chronic and treatable health conditions. But it’s not curable, like Hep C (with which one in three Americans living with HIV are coinfected); HIV transmission is not ending if one in two young gay men surveyed report not thinking that condoms have much use in their prevention plans. The reason isn’t just that there are viable treatments out there if you do get infected. The reason, I believe, is closer to this fact of our youth culture: a need to belong.

Back at an AIDS and literature conference in Key West, Florida, held in 1997, that I was invited to attend as a panelist along with Tony Kushner and Larry Kramer, I introduced the topic of a relatively new phenomenon called “bug chasing” where there was an almost cultlike obsession by some gay men who were actively searching to be seroconverted by an already HIV-positive partner. A sort of searching for solidarity in the face of homophobia and AIDS phobia. In other words, institutionalized barebacking of young gay men purposely getting infected so that they could feel fraternity with others likewise infected.

The reason why I bring this up nearly two decades after the “bug chasers” panel discussion is that today’s PrEP is almost universally accepted as a form of prophy-

A M E R I C A’ S A I D S M A G A Z I N E issue 258 vol. 25 no. 4 April 2016 editorial offices: (518) 426-9010 fax: (518) 436-5354 Editor in Chief & Publisher David Waggoner

laxis, a kind of letting go of the fear that has ravaged MSMs for over thirty years.

Largely a gay and bisexual quandary in this country, the race is on for not only a cure for AIDS but also scientific, medical, and sociological forms of HIV prevention not centered on the rigorous use of condoms. For this month’s double cover story with Teddy and Milissa Sears, we discover their thoughts on the value of monogamy, trust, and awareness that, in their view, are important attitudes largely dismissed by today’s oversexed culture.

In Dann Dulin’s exclusive interview with the celebrity newlywed couple, they express the following truth: “AIDS is not the disease du jour. Zika is the disease du jour and it’s scaring a lot of people....

HIV and AIDS has been around for a long time. Maybe it’s not as terrifying as it used to be, but, it’s still a killer.”

Essentially, they are stressing fidelity to the cause. This steadfast approach serves us well, whether we are part of a group of long-term survivors, as noted in this issue’s “Honoring Our Experience,” by Hank Trout, or up-and-coming advocates making waves in Atlanta, as Larry Buhl reports in “An Epidemic of Inequality.” Staying vigilant is key—see Sherri Lewis’s critique of AIDS revisionism in this month’s Role Call; Tyeshia Alston’s belief in the constancy of love to help us survive in her column; or the belief that words matter when it comes to describing our HIV-positive realities, as noted by our newest columnist, John Francis Leonard.

None of this means blind faith, like some people have accused presidential candidate supporters on the left and the right as having. This is a faith in the cause imbued with our memories of loved ones who died too soon. This is a faith honed by our own struggles to survive and thrive. This is a faith informed by the idea that we can find brotherhood and sisterhood across our differences. We don’t need to chase anything but health justice, empowerment, and the cure.

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: Tyeshia Alston, Noël Alumit, V. Anderson, Heather Arculeo, Larry Buhl, Ruby Comer, Diane Goettel, Sally Hessney, George M. Johnson, Angela Leroux-Lindsey, 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, 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 Nancy Ellegate, 1959–2015 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. ©2016 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.

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44 Cover Teddy & Milissa Sears Talk with A&U’s Dann Dulin About Hitting the Road Again for Kiehl’s LifeRide to Help Raise Funds for amfAR and the Miles We Still Need to Go in the Fight Against AIDS

Features 32 Gallery The Artistic Legacy of Hugh Steers Expands Our Positive Space 36 You, Me & Sunnie Rose Berger Life Group LA Creates Connectivity for Living with HIV/AIDS 38 Finding Your Gate to Life Latresa Rice Brings Her Motivational Energy to AIDS Awareness 42 Live Your Bliss Actor Leslie Jordan Gets Serious About San Francisco’s Maitri 50 Honoring Our Experience Longterm Survivors & Others Build a Community of Support 52 An Epidemic of Inequality Advocates Raise the Alarm in Atlanta 12 Nonfiction by Norman Belanger cover photo by Sean Black

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Treatment Horizons

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Destination: Cure

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The Culture of AIDS

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Survival Guide

New Odefsey is now available Actual Size (15.4 mm x 7.3 mm)

One small pill contains rilpivirine, emtricitabine, and tenofovir alafenamide (TAF).

Ask your healthcare provider if ODEFSEY is right for you.

To learn more visit ODEFSEY.com

Please see Brief Summary of Patient Information with important warnings on the adjacent pages.

Brief Summary of Patient Information about ODEFSEY ODEFSEY (oh-DEF-see) (emtricitabine, rilpivirine and tenofovir alafenamide) tablets Important: Ask your healthcare provider or pharmacist about medicines that should not be taken with ODEFSEY. There may be new information about ODEFSEY. This information is only a summary and 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 ODEFSEY? ODEFSEY can cause serious side effects, including: • Build-up of lactic acid in your blood (lactic acidosis). Lactic acidosis may happen in some people who take ODEFSEY or similar 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 – have 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 may happen in people who take ODEFSEY. In some cases, these liver problems can lead to death. Your liver may become large and you may develop fat in your liver.

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 – nausea – pain, aching, or tenderness on the right side of your stomach area • You may be more likely to get lactic acidosis or severe liver problems if you are female, very overweight (obese), or have been taking ODEFSEY or a similar medicine for a long time.

• Worsening of Hepatitis B virus (HBV) infection. ODEFSEY is not approved to treat HBV. If you have HBV and take ODEFSEY, your HBV may get worse (flare-up) if you stop taking ODEFSEY. A “flare-up” is when your HBV infection suddenly returns in a worse way than before.

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

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

– If you stop taking ODEFSEY, 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 ODEFSEY.

What is ODEFSEY? ODEFSEY is a prescription medicine that is used to treat HIV-1 in people 12 years of age and older: • who have not received HIV-1 medicines in the past and have an amount of HIV-1 in their blood (“viral load”) that is no more than 100,000 copies/mL, or • to replace their current HIV-1 medicines in people who have been on the same HIV-1 medicines for at least 6 months, have a viral load that is less than 50 copies/mL, and have never failed past HIV-1 treatment.

It is not known if ODEFSEY is safe and effective in children under 12 years of age or who weigh less than 77 lb (35 kg).

When used to treat HIV-1 infection, ODEFSEY may help: • Reduce the amount of HIV-1 in your blood. This is called “viral load”.

• Increase 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).

ODEFSEY 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.

Ask your healthcare provider about how to prevent passing HIV-1 to others. Do not share or re-use 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.

Who should not take ODEFSEY? Do not take ODEFSEY if you also take a medicine that contains: • carbamazepine (Carbatrol®, Epitol®, Equetro ®, Tegretol®, Tegretol-XR®, Teril®) • dexamethasone (Ozurdex®, Maxidex®, Decadron®, BaycadronTM) • dexlansoprazole (Dexilant ®) • esomeprazole (Nexium®, Vimovo ®) • lansoprazole (Prevacid®) • omeprazole (Prilosec®, Zegerid®) • oxcarbazepine (Trileptal®) • pantoprazole sodium (Protonix®) • phenobarbital (Luminal®) • phenytoin (Dilantin®, Dilantin-125 ®, Phenytek®) • rabeprazole (Aciphex®) • rifampin (Rifadin®, Rifamate®, Rifater®, Rimactane®) • rifapentine (Priftin®) • the herb St. John’s wort or a product that contains St. John’s wort

What should I tell my healthcare provider before taking ODEFSEY? Before taking ODEFSEY, tell your healthcare provider if you: • have liver problems including hepatitis B or C virus infection • have kidney and bone problems • have had depression or suicidal thoughts • have any other medical conditions • are pregnant or plan to become pregnant. It is not known if ODEFSEY can harm your unborn baby. Tell your healthcare provider if you become pregnant while taking ODEFSEY.

Pregnancy registry: there is a pregnancy registry for women who take HIV-1 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.

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

– At least one of the medicines in ODEFSEY can pass to your baby in your breast milk. It is not known if the other medicines in ODEFSEY 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.

Some medicines may interact with ODEFSEY. Keep a list of your medicines and show it to your healthcare provider and pharmacist when you get a new medicine.

• You can ask your healthcare provider or pharmacist for a list of medicines that interact with ODEFSEY. • Do not start a new medicine without telling your healthcare provider.

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

How should I take ODEFSEY? • Take ODEFSEY exactly as your healthcare provider tells you to take

• •

• • •

it. ODEFSEY is taken by itself (not with other HIV-1 medicines) to treat HIV-1 infection.

Take ODEFSEY 1 time each day with a meal.

Do not change your dose or stop taking ODEFSEY without first talking with your healthcare provider. Stay under a healthcare provider’s care when taking ODEFSEY. Do not miss a dose of ODEFSEY. If you take too much ODEFSEY, call your healthcare provider or go to the nearest hospital emergency room right away.

When your ODEFSEY supply starts to run low, get more from your healthcare provider or pharmacy. This is very important because the amount of virus in your blood may increase if the medicine is stopped for even a short time. The virus may develop resistance to ODEFSEY and become harder to treat.

What are the possible side effects of ODEFSEY? ODEFSEY may cause serious side effects, including: • See “What is the most important information I should know about ODEFSEY?” • Severe skin rash and allergic reactions. Skin rash is a common side effect of ODEFSEY. Rash can be serious. Call your healthcare provider right away if you get a rash. In some cases, rash and allergic reaction may need to be treated in a hospital. If you get a rash with any of the following symptoms, stop taking ODEFSEY and call your healthcare provider right away: – fever – skin blisters – mouth sores – redness or swelling of the eyes (conjunctivitis) – swelling of the face, lips, mouth or throat – trouble breathing or swallowing – pain on the right side of the stomach (abdominal) area – dark “tea-colored” urine

• Depression or mood changes. Tell your healthcare provider right

away if you have any of the following symptoms: – feel sad or hopeless – feel 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 ODEFSEY. Liver problems can also happen during treatment with ODEFSEY 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 ODEFSEY. • 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.

• 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 ODEFSEY. Your healthcare provider may tell you to stop taking ODEFSEY if you develop new or worse kidney problems.

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

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

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

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

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

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

This Brief Summary summarizes the most important information about ODEFSEY. If you would like more information, talk with your healthcare provider. You can ask your healthcare provider or pharmacist for information about ODEFSEY that is written for health professionals.

For more information, call 1-800-445-3235 or go to www.ODEFSEY.com.

Keep ODEFSEY and all medicines out of reach of children.

Issued: March 2016

ODEFSEY, the ODEFSEY logo, EMTRIVA, GILEAD, the GILEAD Logo, and GSI are trademarks of Gilead Sciences, Inc., or its related companies. All other trademarks referenced herein are the property of their respective owners. © 2016 Gilead Sciences, Inc. All rights reserved. GILC0216 03/16

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x o b l mai Niecy Nice!

I saw the movie Selma and I was very impressed by Niecy Nash’s performance in it [cover story, “Soul Mom,” by Sean Black, February 2016]. She really has quite the movie

I just love the show Scream Queens; it is my favorite show on TV. Playing Denise Hemphill on the show, Niecy is just fabulous as the security guard character. Niecy seems like the type of person that would get involved with fighting for something as important as AIDS. So thanks for a nice interview with Niecy “Nice.”

—Susan Shillingfurst Boise, Idaho

not only AIDS. We must not ignore God or laugh at God. So many people when dying have sought the help and reassurance of God. Even sinners have chosen God as the answer to their Salvation. Praise Pastor Jones and all the churches and religions fighting for all of us.

—Mary Louise Fanshaw Lubbock, Texas

Faith & Healing What an inspirational person is the Rev. Stacey Latimer [“Reverent Life,” by Dann Dulin, February 2016]! He is standing for everyone suffering from stigma and AIDS. What that man went through while he was in the military is just criminal; he was treated like a pariah and then

FEBRUARY 2016 • ISSUE 256 • AMERICA’S AIDS MAGAZINE

ACTIVE FAITH

Healing Spirit

Joyce McDonald Testifies Through Art

plus • Maria Mejia-Laing • David Fawcett • Precious A. Jackson • Pastor Mitchell Jones

career going and it’s good to know she was on Scream Queens. I am doubly impressed that Niecy Nash works with Sheryl Lee Ralph and The DIVA Foundation. It’s a worthwhile organization fighting AIDS. Talking about AIDS and young people, Niecy said, “Once they come into the awareness of what sex is then you have to address it and talk about it in ways that are healthy.” I completely agree with that statement because HIV and AIDS among the young is skyrocketing.

—Warren Hiymyer Provo, Utah

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niecy

NASH

MAKES HIV PREVENTION & PROTECTING YOUTH A PRIORITY

in the hospital he had to go through many more things. The organization Love Alive International Sanctuary of Praise Worship Center is one of the best groups in New York City. And thanks to the Rev. Latimer, its founder, the organization has come a long, long way. I commend the Rev. Latimer; he’s an inspiration to all of us.

—Lorde Mains Johnson New York, New York

Church of the Open Mind Praise the Lord for Pastor Jones and his church and his work to save people from AIDS [ “Embracing Authenticity,” by Stevie St. John, February 2016]. I always had the feeling in my bones that the whole problem would be solved by people following the Lord, our Savior. The answer is the belief and faith in what Jesus means to us and what God wants from us. Yes, my fellow believers, God is the answer and we all have to follow him in fighting any disease,

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 • APRIL 2016

photo by Robert Ector

REV. STACEY LATIMER DEVOTES HIS LIFE TO AIDS AWARENESS

“I am doubly impressed that Niecy Nash works with Sheryl Lee Ralph and The DIVA Foundation. It’s a worthwhile organization fighting AIDS.”

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nonfiction

Clean

A

by Norman Belanger

re you clean?” my Grindr date asks me. He’s cute and young, about thirty, give or take. His name is Kenny.

“What do you mean?” I ask, as if I don’t know. I sip my Starbucks.

“You know,” he says, picking at the raisins in his half-eaten scone, “are you disease-free?”

“Are you asking me about my HIV status?”

“Yeah. Are you clean?”

I hate this question. I hate it because it states clearly in my profile, the one that no one bothers to read as they scroll through pictures of faces and torsos and body parts, my status is HIV-positive, undetectable, on meds. I am healthy in every other aspect. I have a good job, I own my own place, at fifty I’m in pretty good shape, I’m basically considered a nice guy, a catch. Still, when this question comes up, as it almost always does in just this same way, I feel like an untouchable.

When I tell Kenny my status, I watch his discomfort, his pretty blue eyes that look everywhere but at me, as if he’s scanning the place for an emergency exit, and I know he will be gone in about two minutes.

“I should get going,” he says, suddenly forgetting we had plans to hang out together. It’s a bright, warm, sunny October afternoon. We had talked about walking along the Charles, to see the leaves. We were going to go to the Square, to browse the stores.

Kenny thanks me for the latte. “Nice meeting you.”

He manages a tiny smile. He zips up his jacket hastily, the hem of his untucked flannel shirt gets caught, he just leaves it like that. He can’t get out of there fast enough.

From the table at the window, I watch him as he crosses the street. He does not look back.

The place is busy, noisy with people, but I am alone, and quiet. I stay there a while longer. The coffee is getting cold, I take a sip, not able to shake this feeling that’s something a little more than sadness, I sit there feeling dirty, and diseased.

dying and death, and he knew it.

Everett died, then Seth.

It was like playing musical chairs. When the music stopped, someone was out. I stumbled through those years, numb among the sick, skeletal, walking dead. In between, I kept dancing and drinking, I smoked and snorted and rutted to forget. I needed to feel alive, to feel a pulse, a warm body, someone to hold onto. I had boyfriends, I had tricks, lots of them, like survivors in a shipwreck, I clung, sputtering, dazed, wounded witness to the end of the world, what could I do but keep playing the game? Take care of me. Don’t let me go. Love me, a little.

By the ’90s anger was the dominant mode, and it took the form of activism.

We wore black T-shirts that said SILENCE = DEATH. We marched in pride parades with Queer Nation and ACT UP. We were angry. We were scared. We didn’t know what to do, so we marched along.

And then it was my turn. I sat in my doctor’s office when I got the news. I just sat in the hard plastic chair, staring at her calendar. December 1999. I didn’t cry. “Do you want to see a counselor?” she said softly, nudging a box of Kleenex toward me. I shook my head. My first thought was to get out of her office, out of the building, and on the street to walk in the falling snow. I didn’t talk to anyone for weeks, I unplugged my phone, called out to work, stayed in bed.

I can’t be angry with Kenny, he’s too young to remember. He doesn’t know what it was like, to come of age just as AIDS was on the horizon. I understand his fear. I was scared in those days, too. I was barely twenty before the first casualties began.

Robert, in July of ’84. He went fast. Paul was next; he was in hospice a few weeks, so we got to say goodbye.

John lingered. He was a ghost by the time he passed like a shadow, after months and months. He scared me the most, with his face, so thin, so gaunt. The feel of his bones when we hugged made me cringe. I hated myself for how I felt, but I couldn’t wait to get away from him, away from the bottles of pills, the diapers, the smell of

And I here I am, dating again in my fifties, navigating a digital world that presents new challenges. When some guy shrinks from me because of my status, yes I get angry, yes I am hurt. But it will pass.

I leave Starbucks after the last sip of cold coffee. I walk out into the bright autumn day, to breathe in the air, that feels cold and sharp, the air that feels clean.

12

Those days turned into weeks, months, and now almost twenty years have passed. In the end I was lucky to be diagnosed when things were changing on the cusp of a new century. And yes, it was luck, the kind that comes randomly, but also thanks to the efforts of a generation of men and women who went before me, those who marched and protested and those who died, whose efforts brought new meds and treatments in the pipeline. I would be OK. I would survive, but I would never forget.

Norman Belanger is living healthy with HIV in Cambridge, Massachusetts, where he is a writer and a nurse in HIV care. His work has previously appeared in A&U, as well as Potluck, Blunderbuss, and Jonathan magazines. You can follow him on Twitter @ norman_belanger.

A&U • APRIL 2016

Benefiting

Rain or shine, this ride is amazing, and so important to the LGBT community living with AIDS/HIV. Being able to bring awareness to the AIDS epidemic before, during, and after the Ride is my reason for riding. I go into the Ride with one goal and finish accomplishing so much more. — Andrew, Rider No. 109

Boston

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brakingaidsride.org 866-858-6877

Bringing hearts together since 1998

P zMatch.c m

NEWSBREAK

photos by Matt McDermott

GMHC’s Spring Gala On March 21, GMHC honored leaders in the AIDS fight at its Spring Gala, which raised funds for the New York City-based nonprofit’s services. A total of nearly $500,000 was raised to support individuals living with and affected by HIV and AIDS, education and prevention programs, and its public policy advocacy efforts.

Hosted by award-winning comedian Judy Gold [A&U, May 2014] at Cipriani 42 Street, the event included live and silent auctions, as well as awards presented by The Good Wife’s Alan Cumming [A&U, January 2004], NYC Council Member Corey Johnson, and NYC DOH Assistant Commissioner Demetre Daskalakis, MD. Broadway triple threat Nick Left to right: Louis Bradbury (honoree and former Board President), Mary Fisher (honoree), Larry Kramer (GMHC co-founder) and GMHC CEO Kelsey Louie Adams [A&U, October 2011] performed a song from the role he originated in Priscilla, Queen of the Desert.

The honorees included Louis Bradbury, former GMHC Board President; Mary Fisher [A&U, February 2001], activist, artist and author; and Dustin Lance Black [A&U, October 2001], screenwriter, director, producer and activist.

Said Bradbury at the event: “One of GMHC’s greatest strengths and sources of pride for me in GMHC has been that it is not judgmental. It has never laid blame or guilt on its clients unlike so many others in our society have done, but rather it has always accepted people for their inherent value knowing that all Larry Kramer and Mary Fisher people matter. While starting as a refuge for gay men living with HIV, it has embraced all people living with HIV from all communities.”

GMHC provides services for thousands of New Yorkers living with and affected by HIV and AIDS, HIV testing and prevention programs, and public policy advocacy. The nonprofit is gearing up for AIDSWalk New York in May. For more information, log on to: www.gmhc.org.

APRIL 2016 • A&U

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NewsBreak

Improving Care & Treatment Recently, Janssen Therapeutics announced grant awards for organizations whose services include improving care and treatment for vulnerable populations living with HIV in the United States. For the ninth year in a row, Janssen, makers of anti-HIV drugs Intelence, Endurant, Prezista and other agents, provided support for comprehensive, community-based models of care and advocacy for populations that are often heavily stigmatized and whose health and wellbeing are hampered by barriers to healthcare, particularly in the South. To date, Janssen has contributed more than $3.6 million to community-based and national organizations.

Aligned with the aim of the White House’s National AIDS Strategy to dismantle health inequities and reduce health disparities, the grants were awarded to sixteen nonprofit organizations for innovative programs dedicated to either young men who have sex with men (MSM) of color, or transgender women and gender-nonconforming individuals. This is the first year that funding has been specifically dedicated to promoting healthcare access for transgender women living with HIV and funding for gender-nonconforming individuals.

The one-year grants were in the amount of up to $30,000.

“The focus of our funding this year underscores our continued commitment to holistically addressing barriers to care among underserved, at-risk populations,” said Nefertiti Greene, President, Janssen Therapeutics, Division of Janssen Products, LP, in a prepared release. “We believe that people living with HIV should have access to compassionate support, and communities play a pivotal role in providing resources to the most vulnerable.”

Improving Linkage to Care and Retention among Young MSM of Color Living with HIV grant recipients include: AID upstate (Greenville, South Carolina); BASIC NWFL (Panama City, Florida); Long Island Crisis Center (New York, New York); NAESM (Atlanta, Georgia); Nashville CARES Inc. (Nashville, Tennessee); SMYAL (Washington, D.C.); TPAN (Chicago, Illinois) and Warren-Vance (Warrenton, NC).

Improving Linkage to Care and Retention Among Transgender Women and Gender-Nonconforming People Living with HIV grant recipients include: Abounding Prosperity (Dallas, Texas); AIDS Project of the East Bay (Oakland, California); GMHC (New York, New York); HIPS (Washington, D.C.); MCCNY Charities, Inc. (New York, New York); Metropolitan Charities (Tampa/St. Petersburg, Florida); Someone Cares of Atlanta (Georgia) and University of Chicago (Illinois).

Billed as the first comprehensive documentary about HIV, aging, and long-term survivors, Desert Migration has already wowed audiences at twenty-plus film festivals on three continents, and its creators want to wow more. The film is currently available for screenings, so why not contact the distributors if your local AIDS organization, theater, or festival is looking for a way to commerorate National HIV/AIDS Long-Term Survivors Awareness Day on June 5 or Pride Month, National HIV/AIDS Aging Awareness Day on September 8, or World AIDS Day on December 1.

Desert Migration (13th Gen and Best Revenge Productions) follows thirteen gay men, all long-term survivors living with HIV in Palm Springs.

Over the years, the California city has attracted a sizeable older population of gay men, many of whom are living with HIV and have been deeply affected by decades of loss and survival. Think Lazarus in his later years.

Desert denizens: Juan (above), and Jeff and Steve About his film, writer/director Daniel F. Cardone told A&U last September that the film seeks to answer this question: “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.” Each subject has a different answer, touching on work, sex, friendships, and love. Many recount their struggles with side effects and comorbidities, as well. Support is important. Says Doc, one of the documentary’s subjects: “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.”

The film is a project of The HIV Story Project, a San Francisco-based non-profit that nurtures film, media and storytelling focused on HIV/AIDS. Marc Smolowitz, executive director of The HIV Story Project, produced Desert Migration.

For more information, log on to: www.DesertMigrationMovie.com.

To book a screening, please contact: 13thgenfilm@gmail.com.

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photos courtesy Desert Migration © 13th Gen LLC

Desert Migration

A&U • APRIL 2016

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by Ruby Comer

18

There are three spacious floors with twenty-five galleries and they’re packed with interactive technology, including 160 screens. I haven’t even mentioned the awesome classic cars! Eye-catching to say the least.

Dustin and I pace through the exhibits on the third floor where we find the Little Miss Sunshine 1979 Volkswagen van, the Batman Batmobile that was steered by Michael Keaton, and the 2016 Aston Martin featured in Spectre, the latest James Bond film. Piloted by, dare I say, the seductive Daniel Craig. Okay…he’s a hunky hunk!

Resting on a nearby bench, Dustin lastly opens up.

Ruby Comer: So tell me, my dear, what’s… going…on?

Dustin Sohn: It’s been a while since we’ve seen each other so….

Well, this past summer I went through a tough situation. I hung out with this really handsome guy. [I arch my heavy reddish Joan Crawford eyebrows and smile mischievously.] Out of respect for his anonymity I’ll call him Josh. He was around my age and also Asian. After the second meeting, it was clearly evident how much he wanted things to work out between us.

He recently had come out and was open about the shame and suppression he felt because of his religious upbringing. Traveling abroad for the first time, Josh ended up partying too hard. He learned the hard way that exploring your sexuality while simultaneously experimenting with drugs is dangerous. He contracted HIV. [My smile morphs into a grim frown.]

[Dustin’s auburn eyes are sullen.] How did you feel sitting there with him hearing this?

Honestly, it left me breathless, but I was determined not to make this a deal-breaker. I was so impressed with his courage and vulnerability to reveal such a fresh wound, but I suppose there was no other way around it. HIV or not, shame and loneliness are such universally human experiences, and so many of us crave the validation that we are worth love. [He pauses.] That was a rough journey I had to go through myself just from the twenty years of hiding in the closet.

Of course….

It’s especially difficult for Josh.

Apparently there isn’t a huge population of HIV-positive Asian men in the States.

Josh mentioned feeling incredibly isolated because of this lack of community among gay Asian HIV-positive men in America.

Does he have support? Has he reached out to any HIV organizations?

He told me that HIV among Asian Americans is still a hushed topic. There’s no representation or a sense of community for Josh, and his loneliness is magnified.

Josh told me that the Asian Pacific AIDS Intervention Team (APAIT) in Los Angeles helped a lot, but the group is small and it’s still a struggle. Since his diagnosis, he encountered two types of people. He had one group telling him about medication A&U • APRIL 2016

Ruby illustration by Davidd Batalon; photos by Dustin Sohn

“I

t’s a beautiful day in the neighborhood….” That tune Mister Rogers used to croon in the opening of his celebrated kid’s TV show, Mister Rogers’ Neighborhood, keeps repeating in my head!

I guess because earlier today I spoke to my neighbor (by L.A. standards that means up to miles away) and he mentioned that he had some good dish he wanted to share.

Since I was already planning to visit one of Los Angeles’ newest tourist attractions, The Petersen Automotive Museum, I invited Dustin to join me for a Sunday afternoon tour.

I “discovered” Dustin when a dear friend e-mailed a link to DearStraightPeople.com, where he writes about his decade long struggles of coming out in a Korean-American family living in the Pacific Northwest, eventually discovering self-love.

Dustin attended the prestigious Rhode Island School of Design. Over the past several years, he’s worked in art departments on film productions, even working on John Legend’s “You & I” music video. He’s also an accomplished photographer.

In January, Dustin attended Sundance for the screening of a film on which he was the art director. The experience inspired him to continue with his own writing and producing. He’s currently polishing a script for a short film. Like all of us, Dustin is no stranger to life’s hard knocks. He cuts a dashing figure, but not long ago he was overweight and battled an eating disorder. Dustin has overcome these challenges in full measure.

Entering the newly renovated museum—the former Orbach’s department store—is like entering the Land of Oz. It’s unusual, it’s sparkly, and it’s smart. The exterior will soon become a landmark that people from all over the world will want to see. It’s hot-red with brilliant silver-colored aluminum ribbons swirling all around the exterior. Truly an architecture masterpiece.

DUSTIN SOHN

and emphasizing how he can live a long, healthy normal life, and the other group telling him how sorry they are, which didn’t make him feel normal at all. He ended by saying that he was just reminded that he’s living with something so stigmatized, it puts him right back in the closet—and ‘it’s pretty suffocating.’

Oh gee. How sad. So you stopped seeing him after a few dates?

A physical attraction just can’t be sustained when the mental attraction isn’t there. [Dustin lowers his smooth, rich voice.] To be honest, I feel a lot of guilt for rejecting him because that could just reinforce his shame and self-loathing.

It was so courageous of him to be so vulnerable, but I couldn’t continue to see him. I explained the situation to him and then cowardly ran.

I refuse to be romantically involved with anyone who struggles to accept themselves. You have to find a way to love and accept yourself and you cannot depend on others to do it for you. If you love the vessel your spirit lives in, even if the world turns against you, your foundation remains unbroken. [He breathes a leaden sigh.] I really hope Josh can get there someday.

So well said, Josh, err, I mean Dustin. Gee, I’m so engaged in your story I got confused. Have you stayed in touch at all?

I recently reached out to him and he told me his family and friends still do not know he’s HIV-positive. Thankfully, he’s found therapy and a tiny support group. I hope this speeds up his healing.

Whew. I was really concerned for a moment about suicide. I wish Josh well; and look how much you’ve learned from a quick interlude! [He strikes a somber face and softly bites his lip, nodding.] How was living in the closet for you?

In high school, I prayed that my gay thoughts would disappear, and perhaps I wished I wasn’t Asian either. But blessings in disguise, there isn’t a more motivating reason to excel in the world than to be a person of color hiding in the closet. You must respect, love and accept yourself, regardless of how the world views you.

APRIL 2016 • A&U

Without a doubt, Dustin. Say, how did you….

Sorry to interrupt, Ruby. I wanted to add something. I never really liked the term, “coming out of the closet.” It trivializes the experience. For many people like myself, “jumping out of a plane” is way more accurate. It’s terrifying the first few times, later on it’s a total rush, and eventually you become so comfortable that it’s no longer a big deal. But no matter how experienced of a “skydiver” you are, you’re alive and you exist.

Nicely put. [Pausing, to hash over his wise words.] Back to my previous thought.

How did you get that spiffy bod?

It was definitely a journey. I unintentionally lost thirty-five pounds in two months in college due to stress.

Then I came out of the closet and started hitting the gym for fear that I would gain back the weight. I was so incredibly insecure about my masculinity and my social surroundings.

The media contributed to the insecurity of all gay men. They were depicted as emasculated men but Asian men aren’t just emasculated, they’re asexual as well. I hated myself and I felt invisible.

Never look to the media for something positive. Oops, am I ditching myself ?!

What’s that saying by Ben Franklin?

Yes, that Ben Franklin! “Believe none of what you hear, and only half of what you see.” You can attribute that to reading too.

[Dustin nods.] Well, Ruby, I pushed myself into an eating disorder out of fear that I would gain back the weight. I would starve myself and then I would binge-eat and repeat. I was trapped in a vicious cycle. As it turned out, it was self-sabotaging because protein and calories are essential for muscle growth. I got myself on track and learned to develop a healthier relationship with food, learned to push myself within reasonable boundaries and learned to allow my mind and body to rest.

How do you care for yourself regarding STIs? I use condoms and occasionally get

tested. [He leans in.] Good health is a privilege.

My body and my soul, no truer words have been spoken! You being in “da biz,” what’s your take on this year’s Oscar kerfuffle about it being so White?

Our industry is so saturated with the same Eurocentric stories starring the same attractive Caucasian actors, and we have such a narrow idea of what’s considered attractive, standard, or normal.

Anything that deviates becomes peripheral, abnormal, and/or unacceptable. There are Asians who wear colored contacts, and black people who bleach their skin.

Diversity and representation in film is so important, but we don’t look at it with a sense of urgency. But when you examine just how deeply it affects our society’s psyche, it literally can become a matter of life and death. I want to help bring diversity to the film industry and broaden society’s ability to empathize.

We rise and stroll gently over toward an exhibit. It’s a bright yellow 1971 De Tomaso Pantera that has a bullet hole in the steering wheel. Owned by Elvis, he shot it because the car wouldn’t start.

Ya know, some days I feel like that too! [We both laugh.] Dustin, tell me, who do you look up to and why?

Steven Yeun…for not only finding his own success, but for writing and producing projects in an effort to bring an increased Asian-American voice and presence to Hollywood.

I also look up to everyone in ACT UP and TAG featured in the documentary How to Survive a Plague. Before seeing it a few years ago, I had no idea all those medical advancements weren’t due to the research of doctors, but a result of activists, allies, and the afflicted patients bypassing the government and testing out non-FDA-approved drugs on themselves.

They were racing against time to survive the epidemic. We only read about breakthroughs from scientists and doctors, but let’s give credit to the surviving heroes of the eighties and nineties.

Rev over to view more of Dustin’s photography at www.dustinsohn.com.

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.

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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.

Justin— This is in response to the expected HIV infections in the Black Gay population that I saw in one of your posts. It cited stats from the CDC that fifty percent of Black Men will test positive as will thirty percent of Hispanics. My question is: Are we doing the right outreach in light of this prediction and, if not, what should we be doing?

—Bob Doyle

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

I hope all is well. I will address your question, but let me further clarify to the readers just what it is you’re talking about. In late February the Centers for Disease Control and Prevention sent out a report on HIV infections among gay males and men who have sex with men (MSM) population.

Utilizing diagnoses and death rates from 2009–2013, CDC researchers projected lifetime risk of HIV diagnosis by sex, race and ethnicity, state and more. The CDC stated that if the present HIV infection rates continue on the trail that they are going, then 1 out of 2 Black/African American gay and bisexual men and 1 out of 4 Hispanic gay and bisexual men will be diagnosed with HIV in their lifetime; gay and bisexual Caucasians still have a 1 out of 11 risk of being diagnosed with HIV in their lifetime.

The release went on to say that

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regardless of sexual orientation 1 out of 20 Black/African American men and 1 out of 48 Black/African American women will be diagnosed with HIV in their lifetime. 1 out of 48 Hispanic men and 1 out of 227 Hispanic women will be diagnosed with HIV in their lifetime. Caucasian men and women have less than one percent chance of being diagnosed with HIV. Certain areas, such as the Metropolitan Washington, D.C. area, are and parts of Florida remain high.

Now, Bob, for the first part of your question: Are we doing the right outreach in light of this prediction? There seems to be a major disconnect between outreach on so many different levels. One of the important things to learn in public health is not to engage one community the same way you would another. The reason why is because needs across communities are different and how one population engages a public health issue may be entirely different than another. Also, for example, if there is a target population that speaks mainly Spanish, you would probably not advertise a public health program in English, with no translation whatsoever.

The message has also changed from what it was to what it is now.

The HIV that most remember is from the early AIDS epidemic of the early 1980s and 1990s, where many gay men and MSM, among others, were dying left and right, where AZT was the only known

HIV treatment, where HIV was also known in the Black/African American community as a white man’s disease, etc. The generation of Millennials and some Generation Xers (through no fault of their own) don’t and can’t recall those things or images, unless they Google them, but they are not necessarily any wiser than earlier generations.

The face has changed (and realize that that first face was not entirely accurate) and there needs to be a new messaging in HIV prevention, especially that which is marketed to minorities.

PrEP is now available and there has been marketing towards gay men and MSM of color, but it is not enough. There needs to be more and in a more innovative way, instead of going to night clubs that gay men and MSM of color frequent and handing out a flyer about PrEP. Messaging on PrEP also needs to be targeted to gay men and MSM of color in their own communities. There also needs to be more and more examples of public health leaders that are gay men and MSM of color on PrEP so that their communities see someone that is familiar to them and looks like them utilizing PrEP. When a community sees, hears, and feels something they are familiar with, they are usually more comfortable with it. ◊

A&U • APRIL 2016

Join Maitri to Celebrate 4pm Sunday, May 1

at Mission Bay Conference Center-UCSF 1675 Owens Street San Francisco, CA 94158

BLISS 2016 Maitri’s Signature Gala and Auction

With Special Guest Leslie Jordan

Emmy awardwinning Actor and Comedian

Maitri Compassionate Care is pleased to announce that Emmy award-winning actor and comedian Leslie Jordan will host this year’s BLISS gala and auction!

Leslie Jordan is well known for his success as a dynamic comedic actor, in particular for his roles in “Will & Grace” and “Sordid Lives”. He has enjoyed rapturous reviews for his original stage plays (including “My Trip Down the Pink Carpet”), his roles in the off-Broadway production of “The Lucky Guy” and the hit movie “The Help,” and his HBO special, “Pink Carpet”. But this witty Southern Gentleman, born and raised in the conservative Bible Belt of America, is also an esteemed and generous advocate for equal rights.

On Sunday May 1, join Leslie Jordan, the Man Dance Company, jazz vocalist Branice McKenzie, guitarist Andre Morgan and other fabulous guest artists in celebrating the healing power of joy.

Tickets to BLISS—Prescription: Joy are now on sale at www.maitrisf.org

Performances by Guitarist Andre Morgan, Jazz Vocalist Branice McKenzie and Man Dance Ballet Company

Maitri is the only AIDS-specific residential care facility in California since 1987 focusing on the underserved community of those dying of or severely debilitated by AIDS.

Two Girls, One Pond

I

met Kiva my second year in college… he was blond at the time, and devastatingly beautiful. Beautiful the way that only nineteen year-olds can be: His face and body were all long sharp delicious geometric angles. He was one of the few boys I would have kissed in college. I didn’t kiss many boys in college. I was a prude. But I would have let Kiva get it. He was smart and irreverent and non-descriptly Asian: Vietnamese by blood, Chinese in looks, and with a personality like the cocky Korean boys I grew up with. At the time, I was racist, and ignorant, and juvenile in my attractions—mostly only attracted to White boys who looked like they were raised in a corn field, but I would have made an exception for Kiva. (Obviously I have since evolved in my attractions: One must learn to look at our subconscious biases and be critical of what discrepancies we find there.) Anyway! I had a crush on Kiva but because of a miscommunication, we never became anything more than friends. I think I hurt his feelings…. He wanted to kiss me one day, and I hadn’t brushed my teeth that morning so I said no, and he thought I rejected him.

End of romance.

Silly how things work out: It’s the tiniest bit of missing information that can prevent a grand love affair. But that was twenty years ago.

RightNowThisVerySecond, Kiva and I are having lunch at my favorite Thai restaurant. And our wings are flapping frantically; and we are flying around in tight concentric circles, and our beaks are clacking against each other like ducks fighting in a pond. There are loose feathers all over the table, and Kiva is screaming something about “Edge Theory,” and looking at me like I’m a crazy person! And I am yelling at the top of my lungs, “But what about undetectability?!” and sneering at him condescendingly in-between my syllables! And we are both being too loud, and too honest, because we both care too much.

Kiva has stated that he will not knowingly date someone who is HIV-positive.

22

And I am mortified.

My feelings are a little hurt; but since I am too insecure to just say that, I have wrapped my hurt into rage, and have decided to teach him a lesson. It must be noted, that Kiva is still devastatingly handsome, and magically looks EXACTLY how he looked twenty years ago.

He is HIV-negative; and on PrEP; and not nearly as ignorant as I want to paint him. He may not know the new science, but we’ve been going back and forth for an hour now, and his arguments hold: “The dissemination of information is still unclear, and until everyone is on the same page, I have every right to mitigate my risk.”

I am livid.

And he is afraid.

I am HIV-positive—have had every STI known to man—have been undetectable for more than fifteen years now— and I can’t possibly remember what it’s like to be afraid. For me the fear is completely intellectual, and because I know that the risk approaches nil, I’m livid that he just won’t make the leap. With his body. His safety. His soul. His life….

And despite the conflict of interest, I’m trying to explain to him why it’s okay to have sex with me. And that’s when Kiva yells “Bull Crap!!” And he slams his glass of water on the table, and we both look at it stunned.

Somewhere a baby cries in the distance and a tree withers in a forest.

We both begin to laugh uproariously. The tension dissipates in a breath, and we are back to calling each other derogatory gay-names; and racial slurs; and other terms of endearment…because we are girlfriends and sisters and fierce queens fighting on the same team!

He is afraid and I am hurt. But we are on the same team. In my attempt

to “educate him,” I almost forgot that.

We are on the same team. He wants to stay safe, and believe it or not, I want to keep him safe. And more importantly he wants to learn; which is great! He’s on PrEP: He has already done the best thing he can do. Not everyone has to want to have sex with me. I’ll tend to my hurt feeling elsewhere...

I paddle up next to him in the pond and begin to play footsies with him under the water.

I tell him how handsome he is; have myself another plate of pad Thai; and ask him to explain to me Edge Theory.

And he asks me to explain Undetectability. I’ve forgotten already what he said; something about the exception not being able to prove the rule…. He tells me the “undetectability thing” sounds promising, and that he might consider that at some point as the information evolves.

And I tell him how much safer it is….

“But how am I supposed to know if they are actually undetectable?” he asks.

And I admit that: “To be honest, there is no real way to know that.”

So then he rolls his eyes and says, “Well that doesn’t really help me very much does it?”

I shrug.

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

A&U • APRIL 2016

illustration by Timothy J. Haines

when words, numbers, and PrEP are still not enough...

PAGE INTENTIONALLY BLANK

Dating in the Deficit

D

eficit: the amount by which something, especially a sum of money, is too small.

If perfect dating as whole were $1.00, then dating as a black queer and gay man would amount to about 5.3 cents. Just kidding, but not by a long shot. Dating in the black gay and queer community for me has been interesting to say the least. As a person who has never had a boyfriend nor been in love, I have the opportunity to still write much of my narrative that so many have already experienced. With that said, the rules and regulations that we stipulate upon ourselves in our community are unlike anything I have ever seen.

Take Jack’d for instance, the popular dating app used by many in the black LGBTQ community. I was on Jack’d for years, then left for about eighteen months, then decided to log back in to see what I may have missed. I hadn’t missed shit much to my dismay, but what I did notice was a trend throughout profiles that was different for me. “No fats, No femmes DD Free.” Splashed from screen to screen, profile to profile, this line is used to tell folk “don’t even come this way.” Now on one hand I get it. If it’s something you don’t like, then you should be able to say it and not get questioned for it. Then I take a look at this other hand of mine that wants to smack folk. This right hand of mine, tells a different story that goes like this.

The fragility of masculinity in our community is what helps dictate this narrative of “no fats or femmes.” I understand you like what you like, but to eliminate a whole community of people based on the perceptions of one’s effeminancy or size is discriminatory. Jack’d is a dating app, so I know much of it is based on attraction to one’s face and body and then figuring out the rest of their personality, but does it really hurt to just say hello? Is it too much to ask for that you don’t outright just tell folks “you’re to fat, or too flamboyant” to even say hi to me. That’s some fucked up stuff.

The second thing I see all the time now is “DD Free.” Sound off in 3…2…1….

What. The Fuck. Is DD Free some kind of cute way of saying “I don’t date people with

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HIV”? And I understand you don’t want someone who is on drugs, but you got “420” in your profile, so you don’t want yourself either? Oh that’s right, weed is not a drug but I’ll digress. I mean honestly, what disease other than HIV and AIDS are you referring to? Are we talking about rabies, the Plague, small pox, SARS, influenza, pneumonia?

Those asking for someone to be drug-free, I can understand, but don’t ask of others what you are unwilling to do of yourself.

Seriously folks, you can’t get HIV by listing the letters. Please read the Cliff’s Notes and realize that HIV, although serious, is quite manageable and people are living with it knowing and unknowing. “Disease Free” is also only as current as your last test and goes out the window with your first sexual experience after your last test. So if you are looking for someone who is “disease free,” they would need to be getting tested after every sexual encounter, plus accommodate for the window period which would equal virtually NO ONE! I get that you may not want to date a person that is HIV-positive, but be human enough to give the courtesy of saying that and not “DD Free.”

The deficit comes into play when you add all the factors of our community together and we eliminate our own potential dating pool based on perceptions of people and assumptions of the who, what, when, where, how, and why they are based on one aspect of their lifestyle. Femmes and Fats can’t be tops and are less desirable.

Personally the deficit has come up in a variety of ways. One is that I allowed myself to date or show interest in people that I know I don’t really want to be with, but, because of the limitations in the dating pool, I accept what they have to offer because

at times it is better than being alone. Text message relationships, as I like to call them, used to fill the voids of silence throughout the day. “Good morning,” “HRU,” “How is your day”—on a daily basis with no real substance being exchanged. These relationships, that in person would amount to talking to paint on the wall, used to add some coins to “The Deficit.” The years, upon years, upon years, of hook-ups, one-night stands, FWB’s, dating (but not exclusive), “talking”—all just pennies, nickels and dimes trying to add up to the equivalence of what we really want, but always keeping us in “The Deficit.”

I’m tired of dating in a deficit. I’m tired of people having to feel as if they are undesired, unwanted, or pretending to be more of something they are not for the consumption of other men. I don’t know if this will be read by 1, 10, 100, or 1,000, but what I do know is that if you are reading this you need to ask yourself. Am I DATING in the Deficit? Or am I CREATING the Deficit.

Like what you like. Love what you love.

You may be a day late, but you don’t have to be a $1.00 short.

George M. Johnson is an HIV advocate who works for Us Helping Us, People into Living located in Washington, D.C. He has written for Pride.com, Musedmagonline.com, Blavity.com, Rolereboot.org, and Ebony.com. Follow him on Twitter @IamGMJohnson.

A&U • APRIL 2016

illustration by Timothy J. Haines

no fats, no femmes, dd free—they just don’t add up

VOLUNTEER. DONATE. DELIVER.

BECAUSE FOOD IS MEDICINE.

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

#VolunteerNYC

@GodsLoveNYC

Choosing to Love

if you question yourself, the answer is love

R

ecently, a friend of mine (one whom I consider to be a sister) experienced some hardship from her spouse that left her emotionally hurt, even though he most likely didn’t intend or even want to hurt her, especially as severely as he did. But she was hurt. To lead a person on and give them false hope and then instantly take that hope away can kill and/or damage the soul. For some, it can create a spirit of hatred, for others it can starve the chances to ever feed on the ability to hope again; all because of the fear to ever love again.

My sister’s pain was so intense that many of us around her felt her pain, but you could not see her pain. After opening her heart to another person only to once again have it shattered, she had cried out loud in private but only a small group of people knew of this pain; when she went out in public she graciously held her head up high, smiled, and somehow had the strength the encourage someone else even in the midst of her own pain. Why? Simply because she continued to have hope in the essence of love and to shield herself from the fear that comes from a spirit of hatred; she was able to go on only because of that one great gift, the greatest gift of all, that each individual seeks...Love.

Without a “love is blind” kind of love, you can begin to question yourself, the other person, your supporters, and even love. Therefore, you must have a reason to remain in love, to hope in love and to fall in love over and over again. My sister had this deep faith in love.

Her story made me take a step back to look at my own story—her struggle came at a time when I had to make the decision to take HIV medications.

Now, many of my friends consider me to be the strong-willed one. For some reason, they believe that I have it all together, perhaps because they know that, no matter whatever happens, I lean on my faith and hope in my faith to bring me through any and all trials.

However, they don’t realize that being HIV-positive packs its own bag of troubles.

For example, I did struggle with the decision to start HIV medication. A decision that I didn’t take lightly. I had many thoughts about how the medications would change my daily activities. Hearing stories from other people taking an HIV regimen had me questioning if it really was worth taking.

Many of us, including myself, may have

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to force ourselves to get into the routine of managing our HIV/AIDS disease. Importantly, we must have reasons to continue to follow that routine. Taking an HIV regimen is no one’s dream come true, but when you have the ability to access a medication that you know that you cannot afford each month and a medication that some have been denied from obtaining, then that is reason enough to follow the script as the doctor has ordered.

In the end, love and faith overshadowed all fear and led me to make the right decision.

Love for my newly adopted son, love for my family and friends, love for life, and most of all, love for myself allowed me to hope for the best. Instead of fearing the meds, I chose to love life and fight to live.

As a mother, I vowed to do all I could to make sure that my child has the best life possible. Therefore, it is my duty to follow the plan because anything less can cause him pain in the end. I refuse to have my child fear the worst when I can continue to give him hope by loving him enough to fight to live.

As a minister of the gospel, you are not expected to have an HIV diagnosis. You are expected to live according to higher standards and expectations. Most often, the people will look at you differently only because you do not meet their expectations, but when you choose to try to meet their expectations by trying to give the people what they want you will also be choosing to lose a part of yourself and diminish a part of your purpose. You must learn to care for yourself (I had to learn to do just that). I made a decision years ago, to not lose a part of me trying to meet another person’s expectations. I am HIV-positive and I choose to love me. You have to love yourself and work hard to fulfill your purpose in life in order to effectively love others and minister to them through their pain (and as an Evangelist, I must continue the work). Ultimately, I had to remind myself that no matter what your position is in life you must love your life and strive to live your “best life.”

In my past, taking an HIV regimen was not the answer. Therefore, I strived hard to do everything I possibly could to keep my numbers up so I wouldn’t have to hear my doctor tell me “that now is the time to consider taking an HIV therapy.” However, today staying alive and being healthy is the only answer for me. It’s the only answer for my son, for my family and it is the only answer for my pur-

pose. Before I cause any pain to those whom I love and love me back, I must do what my doctor suggests in order to be there for my family and to stay on top of the ground.

The one thing that I truly hate about the wait on taking medication is that once I heard my doctor tell me that it is time for me to start taking the medication, it was as if I just received my HIV diagnosis all over again.

Therefore, I suggest taking the medication once you have received the news so you will not have to endure a second “Big Bang” in your life.

If you don’t understand your HIV/AIDS regimen, seek answers by asking as many questions as you need to in order to ensure a good and healthy life. There is not one person on earth who can be a good parent to their child if they are not here to be a parent to their child. Fight for your life and for your family but most of all, fight to survive for yourself.

Following my friend’s willingness to love in spite of the obstacles, I walk boldly with my head up high in the spirit of love. Love is going to carry me through every moment that I have to take my pill and love is going to keep me adherent to my regimen.

Love is blind but it is worth fighting for.

Just remember, that in order to fight for true love you must know how to administer it to yourself first before you can even think about sharing this gift with someone else.

As an HIV/AIDS advocate and evangelist of the gospel I chose to love by loving myself enough to do what it takes to live a healthy and HIV “POSITIVE” life. I’m determined to live my best life and you should, too.

Tyeshia Alston is an HIV-positive AIDS activist and educator living in Dallas, Texas. Ms. Alston strives to build hope, increase faith, and encourage others to live their best life. Ms. Alston is a mother of a handsome two-year-old boy. She is driven to educate others about HIV/AIDS by creating community awareness programs and providing HIV/AIDS services through her organization, SAAVED INC. Ms. Alston, has traveled to Washington, D.C., to speak with legislators about better healthcare access and how the disease has impacted communities which she serves and has served on panels for National Minority AIDS Council and other local organizations.

Lastly, she is known to others by bringing her message to local talk shows and radio stations, working to do her part in ending AIDS. To learn more about Ms. Alston’s work, go to www.saaved.org and if you have any questions or comments, please feel free to email her at saaved2heal@gmail.com.

A&U • APRIL 2016

JULY 2015 • A&U

27

lifeguide

by Sherri

I

t started with Charlie Sheen’s widely televised disclosure about his HIV status and his search for the cure in Mexico and a quack doctor by the name of Sam Chachaua. Sounded a little like a treatment for a Dr. Seuss book—not solid advocacy about HIV treatment!

Activists heard the alarms and off they ran like firefighters, sliding down their poles and rushing to their Twitters and social media pages to rescue thirty years of activism and education about HIV that one celebrity’s ignorance was about to take down. I however was slower to advance to this emergency. Was it my own insidious complacency? Or, to be fair to myself, AIDS fatigue? After being an activist living with HIV for those thirty years, now half my life, I wanted to rest.

But my perceived retirement as an activist was not over. I engaged on social media, and I wrote to my doctor to see what if anything she could do to help. Then I checked out Dr. Oz with Charlie and his quack doctor, and watched Real Time with Bill Maher, who was actually giving this quack prime time on his HBO show. Maher even supported what this quack was promoting, injecting milk from an arthritic cow that he claims cures cancer and AIDS! Of course all this and other claims to his brilliance were quickly dispelled by quick articulate AIDS activists.

Listening to and watching Charlie was heartbreaking. He was so shaken and broken, trying to keep it together. It was obvious he was in a lot of distress. I remembered feeling the same way he did. Terrified, desperate but keeping a smile on my face as I faced my family, friends, and fiancé. Charlie was in the dark in public, a scary place to be, uneducated about HIV and a perfect target for anyone that would offer him a cure for a lot of money. He had stopped taking his antiretroviral medication, direction given to him by Sam Chachaua. Thankfully, Charlie dumped the quack and returned to his antiretroviral medication but is still on his quest for a cure. And who isn’t? Dr Oz is doing a series of shows with Charlie Sheen so his progress will be public.

Then this happened.

The former First Lady Nancy Reagan died at the ripe age of ninety-four. Lucky her, and condolences to her family. Both she and her beloved Ronnie, President Reagan, are together again. The news of her death left me cold, just as I remember her. Yes,

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Lewis

AIDS Revisionists our history will not be rewritten

of course our elegant current First Lady Michelle Obama will say some nice things about her but there’s a world of difference between these two first ladies. And it’s not because of the times; it’s because of the people they are. People shape our history by how they respond to life. People mark an era.

And you only hope to be on the right side of history when it rolls out. The Reagan era cannot be revised, certainly not by Hillary Clinton, who heaped upon Nancy glowing accolades about her part in the fight against AIDS. After activists spoke out, Clinton retracted her version of history. The Reagan era was what it was and is forever our history.

That’s not a news blast but to some it may not be that big a deal. There seems to be a revisionist groundswell going on. On social media there’s a lack of real empathy about the AIDS story. The posts are from a younger generation. So I am compelled to say something, share some stories of that history though I’m uncertain what will come of it. I just have to say what I need to say.

Some people think of the eighties as a fun time with pop music and wacky fashion.

It was for a minute and then it wasn’t. A sharp contrast to the neon colors and spunky punk beats there was a darkness hovering over our little colorful village. It was called AIDS and it would become the holocaust of the eighties.

You think I’m exaggerating? Being too dramatic? Not really.

Most people have seen images of the Holocaust, the devastation, the horror how people suffered. How could anyone allow that to happen? Where’s the humanity? The photographs of people with AIDS from that time looked like they were in concentration camps. Wasting away, unable to hold down food, young people suddenly becoming “elderly” with no immune systems left to protect them from Kaposi’s sarcoma, dementia, blindness and yet not a word from our government. Not a whisper. I can’t tolerate that apathy. Even walking on World AIDS Day in Los Angeles this year the turnout was sparse, and I said to a friend of mine, “Where is everyone?” as we walked down Santa Monica Boulevard with our candles, in memoriam.

“Well isn’t this what we wanted?” he asked.

I was confused by his response. Was he meaning to say, don’t you want people not to get infected anymore? Of course no one in his or her right mind would want anyone

to get infected with HIV. But the walk isn’t a protest; it’s in memoriam. Did I want this younger generation to be apathetic and not really care except superficially? God I hope that doesn’t happen.

During the 1980 elections I was in my early twenties and living in New York City.

On election night, like I had done so on many nights, I was hanging out with my friend Richard Cheney, (ironic name for him to have) in his fabulous bohemian Chelsea loft with his boyfriend Ron Barretta. Richard in his kimono with a cigarette holder in one hand puffing away and a martini in the other, we sat and watched the election results.

Suddenly Richard said, “Darling, if Reagan gets in we’re all going to die.” A chilling prediction. I was stunned. But his prediction was, dare I say, dead-on.

Several years later, Richard was sick all the time and diagnosed with ARC. (ARC, or AIDS-related complex, is a term that has not been used for decades; it means your T-cell count was not quite low enough to meet the criteria of an AIDS diagnosis but your health is in serious decline.) He got sicker and was finally diagnosed with AIDS and was hospitalized. It would become his new residence.

Richard was a fashion designer and artist who painted murals that now covered his hospital room walls. His deco vases from his home were overflowing with fresh birds of paradise and his other favorite exotic flowers.

Ron took care of him even though his own health was failing, but was not as progressed as Richard yet. I remember thinking how frightened Ron must be seeing this happening to his beloved boyfriend, knowing that soon that would be him.

Friends lined up in the hallway to visit.

All of us scared but hearts full of love and courage. Ron met with us in the hallway and briefed us with an update on Richards’s health. We supported each other as we entered his room, putting on our best party faces. I remember stroking Richards’s boney beautiful hands, his long fingers that were always manicured. I wiped the tears off his face that were streaming from under the eye packs that had been applied because his eyes were bothering him. We kept our conversation light—fashion, manicures, gossip—and then hopeful with the news of AZT. Departing Richard’s room, we were somber and silenced by the horror, panicked by the level of the atrocity of AIDS and terrified A&U • APRIL 2016

photo courtesy S. Lewis

who would be next. The impending doom knowing that Richard was close to the end of his life was unacceptable. He would be my first friend to die of AIDS. There would be many more. This scene and Richard’s story was all too common, as thousands were lying in hospitals dying and being cared for by their own sick friends. It was an epidemic. It was a plague. It was a gay disease at the time, or so they thought, and only we seemed to care. ACT UP was taking the fight to the streets and leading the way to the powers that could hopefully help to save lives. To get action for treatments and expedite the process that daily was taking lives. AZT had just become available to only a limited number, those with some money and the very sick, those near death’s door. Everyone hoped that would be the answer. The unknown, this frightening world we suddenly found ourselves thrust in had no treatments and no hope.

Richard died. It was a long, slow suffering death, the kind mixed with relief and grief. Relief when he died because the suffering was over and the slow thaw of grief that followed. Ron died soon after. I can still hear his soft voice. There was little time to grieve as one friend after another fell sick and died of AIDS. It got to the point you didn’t want to ask how a friend that you hadn’t seen in a while was doing because the response was always in that dreaded tone, “Oh, you didn’t hear...he died.”

All this time, over 20,000 and escalating lives gone and their grieving friends and families devastated and President Reagan never whispered a word. Our government under the Reagan presidency was criminal in its negligence during the AIDS crisis. It was heartless and cold, even to the Reagans’ friend Rock Hudson. The shame belongs to them and to no one else, certainly not the sick, suffering or dying. Silence equals death.

During this time, my roommate Laurie was exhausted all the time. Hot rashes ran up and down her body. She was running high fevers and her body was covered in hot red rash. She was in and out of the hospital emergency room always with the same answer. She’s got the flu. Rest, drink plenty of fluids and take asprin. Because she was a woman no one even suspected she might have AIDS since it was a gay disease.

Laurie’s health rallied and she moved out of my small apartment to her own place. About a year later we bumped into each other. She had gotten very thin. “Oh my god you’ve lost so much weight!” I exclaimed. “What are you doing?” “Oh I’m having a lot of sex and it keeps me skinny,” she boasted. But something was not right.

Several months later Laurie’s mother APRIL 2016 • A&U

called me crying. Sobbing over the telephone, she said, “Laurie’s in the hospital. She’s dying. They took every conceivable test and they don’t know what’s wrong with her. Can you come see her?”

When I got to the hospital there was a sign on her door that read “CAUTION: Body Fluids” and a basket next to the door with a gown, gloves, and a mask to put on to protect yourself when you entered her isolated room. I knew where I was.

My friends in NYC, 1980: “Richard Cheney, in his Pierrot, and Richard had the same sign on his Ron Baretta in his Swami exotic. Richard made these costumes. They were professional. Good enough for Broadway. door. I was on an AIDS ward.

Nobody gets out alive. Laurie was He did that all the time. Out of these friends, five died of AIDS in the final stages of AIDS. She in the next six years, two are positive, one died of cancer, and the others unknown. At the time this photograph was taken had a brain infection and was we were still having the time of our lives. No one knew they hallucinating. Her arms were had AIDS or HIV.” flailing around trying to swipe at things that weren’t there and her and most productive years of my life was eyes were rolling around in her head. I was shocking. And though there was no way to frozen. I couldn’t leave her side. Her mother know what living with this disease would be sat in a chair in the corner of the room with like for thirty years I know it’s by G-ds grace dark sunglasses on and said, “We know what that I’m still here to have witnessed medical she has but we’re not going to talk about it.” breakthroughs and someday the cure, just For one brief moment Laurie’s eyes like Charlie. connected to mine. She said in her frail, The history and mighty success of the wobbly voice, “They spent a lot of money on great AIDS story are so vast and sacred. this wing,” She knew where she was. Laurie They are our lives and for many of us our was a graduate of the University of Arizona, footprint on this earth. There will be a a biochemist who worked in the very hospital home for our history at the National AIDS she was dying in from a disease no one Monument in West Hollywood, California wanted to talk about. Not even the President (www.aidsmonument.org). It will be the first of the United States. Laurie died a couple of of it’s kind. It is a work in progress, currently days later. She was just thirty years-old. Her still raising funds. It will ensure there will mother was devastated. It was all too much. be no revisionist to deny or minimize our Her obituary said she died of a rare cancer. history and the depth of our stories, so that A few years later, I was living in Boston those we lost will live on through us. The with my fiancé. We were both excited to start multiple losses our government and who our own family. I wanted to get pregnant was President during those horrific years will the minute I said, “I do!” I was thirty-two he not be glossed over. The truth will be told, as was forty with a teenage boy he raised on the historians have known it for decades not his own. We were good to go. After Laurie’s the revisionists. death the chilling image of her kept flashing We will never forget. through my mind. With an HIV test now It is our atonement to right the wrongs. available I thought it best for me to get tested If we stay vigilant I believe we can find peace. and get a clean bill of health before I got I am good person. I am a woman. I am pregnant. Instead, on April 12, 1987, my an activist. I am healing. I am alive. I am a thirty-third birthday, I was told I was positive survivor. I am still here. over the phone by a doctor who had never “To remain silent and indifferent is given those results before. My fiancé was the greatest sin of all.”—Eli Wiesel, Jewish negative. We married and stayed together writer, professor, political activist, Holocaust for seven difficult years. There would be no survivor and Nobel Laureate babies. No career. And little sex.

I am a long-term survivor. I am a veteran A native of New Jersay, Sherri Lewis spent her of the AIDS war. I live with those traumas twenties in New York City as an entertainer. She that are seared into my memory forever, just was diagnosed HIV-positive in 1987 after going for a routine blood test for her marriage license and like any soldier who’s been in a war, or any been an activist living with HIV for thirty years. survivor from the Holocaust. Being handed Sherri is currently living in Los Angeles with her dog a death sentence while young and on the Romeo, recording music and writing her memoir. threshold of the happiest time in my life

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lifeguide

If you Stand for Nothing we need words to live by

30

coin came up. The person who flipped the coin was not only my dearest friend, whose opinion I take seriously, but also a knowledgable AIDS advocate. According to him, these days, “HIV disease” is term that is sometimes used by medical professionals.

I pointed out that most of my treatment for HIV has been received in a major city (there’s the chip on my shoulder!) and, until now, I had never been referred to by anyone in those terms. And the back and forth continued. He provided me some links to mainstream sites that do use that very phrase. I researched some others, and they don’t, but I stand humbly corrected.

That said, I don’t care for the term. I am HIV-positive. Ultimately, I’m “living with HIV’ but admittedly getting doctors and others to use the phrase is maybe too much to expect. Many people will agree with me, some will not. Ultimately we each ourselves decide how we wish to be labeled, what boxes we tick. For me, the professionals providing my treatment should take more care with their words.

Now, what I won’t concede: I am not “suffering” from anything! I’m a lucky man. I’m receiving top-notch medical treatment and the virus, for all intents and purposes, has been stopped in its tracks.

Yes, people do still die of AIDS-related causes, but, in this country, and in many

more, we are receiving treatment. The most hard-to-deal-with response from men I wish to have sex with is the fear that they’ll get it, but I can understand that.

What I don’t understand is adult gay men, many of my own age, who truly believe that I could drop dead at any minute. So “suffering from” hits a nerve for me. I get it, the situation is not ideal. If nothing else HIV is a logistical nightmare. Securing the proper medical care and paying for my mind-bogglingly expensive meds is a challenge in a smaller community as well as a large one. This stigma I’ve already spoken of is another. But all in all I have no complaints, I saw the alternative far too often only a couple of decades ago.

Now that’s suffering, and it’s terrible. Yet here I am living a very healthy life with everything that could possibly ail me tested and checked and treated. I’m well covered, thank you.

To paraphrase Hamilton’s words, “if you stand for nothing, you’ll fall for anything.” I’ve neglected calling my doctor’s office until now. Tomorrow, I’m going to make my displeasure known.

John Francis Leonard is an advocate and writer, as well as a voracious reader of literature, which helps to feed his love of the English language.

He has been living with HIV for twelve years.

A&U • APRIL 2016

illustration by Timothy J. Haines

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ne of the luxuries of the full-time career I left behind some years ago was dental coverage. Luckily, until recently anyway, I’d never even had a cavity, but lately my lucky streak has ended. So, I found myself in a dental clinic downtown in my small hometown city to which I’d relocated after giving up said full-time career. The very kind dentist informed me that I would need a letter from my doctor clearing me for the work since I am, in fact, HIV-positive. He assured me, with some embarrassment, that it was for my own protection, not theirs. Something about my white blood cell count. My readily raised hackles probably had him a little nervous. Yes, I was a little frustrated with the wasted trip, but my status had hardly come up when I made the appointment. I made another appointment and contacted my doctor’s office that same day.

Now I’ve been lucky enough to find in my area a good, old fashioned G.P. who is also an infectious disease specialist and, let me say before I go any further, he’s a great guy and a good doctor. I’m lately of Beverly Hills and a job at one of this country’s top hospitals, so I expect and insist on good medical care. His office is quite efficient and they contacted the clinic to find out exactly what was needed and I received it in well under a week. Now I admit, I am a person who readily takes offense with two major things, ignorance and intolerance.

So it was with much dismay that I read a particular sentence in this letter. “John is a long-time patient of mine who suffers from HIV Disease.” HIV Disease? That’s just medically inaccurate. Remember, this letter is written by a medical practice that treats many patients who are HIV-positive.

And “suffers from”—that’s just patronizing at the least. I’ve not taken to my death bed, ready to draw my last breath. Believe me baby, I’ve seen that happen more times than I care to remember. I’m a perfectly healthy man with an undetectable viral load living with HIV. And again, my doctor didn’t write this glaringly ignorant statement, someone in his office did. Without malice, certainly, but in ignorance?

Definitely I was righteous in this opinion, convinced that I stood on firm ground in my anger and disappointment. Then, as so often happens to us, the flipside of the

GORGEOUS BLEAKNESS: beauty in the most brutal forms American figurative painter Hugh Steers lures us back to a desperate time through his arresting, full-color imagery in Visual AIDS’s recently published, first monograph featuring over 600 works by the artist: Hugh Steers: The Complete Paintings, 1983–1994

by Sean Black

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with and succumbing to AIDS which he cinematically illustrates in bold vibrant colors throughout his deeply personal descent.

Countering his Neo Pop contemporaries Steers offered, “I think I’m in the tradition of a certain kind of American artist—artists whose work embodies a certain gorgeous bleakness: Edward Hopper, Jackson Pollock, Franz Kline— they all had this austere beauty to them. They found beauty in the most brutal forms. I think that’s what characterizes America, the atmosphere, its culture, its cities and landscape. They all have that soft glow of brutality.”

The soft glow to which Steers refers emanates quite literally as well as figuratively from his rich allegorical paintings brushed and lacquered with honesty, tenderness, humor, sensuality, liberation and ultimately acceptance of his dramatically shortened mortality.

Upsetting at times yet always inMaroon Shed, 1991, oil on canvas, 60 by 60 inches triguing, these medium-sized (on (152.4h by 152.4w cm). Courtesy Alexander Gray paper) and large-scale (on canvas) Associates, New York • © 2016 Estate of Hugh melancholy tableaus deliberately Steers / Artists Rights Society (ARS), New York unnerve in tight quarters, on precarious ledges, in radiant hues

orgeous bleakness. These are his words self-describing his artistic perspective in an interview in September of 1992, just three years prior to his death from AIDS at the age of thirty-two. Hugh Auchincloss Steers (1962–1995) not only embraced representational painting and figuration unlike other approaches more in fashion at the time, but also his dealing

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and deep shades while illuminating the failing health of Steers and his friends during a grim era never redundant in the constant reminders of his own high probability of death. Turning away from the morbid and helpless however, Steers hallucinogenic dreamscapes are boldly imaginative and ultimately brave. A notable example, Black Bag, 1993 (oil on canvas 45 by 38 inches) presents a transient character center stage, a grim reaper of sorts, the lost lover he longed for, or perhaps a hurried friend off to another funeral decked in symbolic black attire; the slingback heals in tow representing another life taken after an arduous fight. Predominately male characters occupy his painted space; languid, in pumps, teetering, many times bare or in white briefs and usually coupled, all never appearing any older than the artist himself.

Born and raised in aristocratic privilege in Washington, D.C. to an affluent and political family, Steers trained in painting at Yale University and Parsons School of Art and Design. As noted in one of his A&U • APRIL 2016

A&U Gallery impressive biographies, “he was celebrated for his ability to capture the emotional and political tenor of New York in the late 1980s and early 1990s, particularly the impact of Queer identity and the AIDS crisis.” Coming from a family of means both artistically and financially as well, Steers’ work has been maintained, unlike that of many of his contemporaries of the time dying of AIDS whose work was swept away and lost in frenzy of chaos, abandonment, financial distress, desolation and sickness.

In an A&U interview in August 2005 by Dann Dulin, Steers’ uncle, the late Gore Vidal said, “I know a thousand people, I suppose, who’ve died from it but the only person that I knew well was my nephew, Hugh Steers [A&U, September 1996] who was a magnificent painter.” For the viewer of his work, more so today in fact, Hugh somehow endears himself through his evocative paintings first as a complete stranger then moving through his work he becomes friend, brother, son, lover and nephew.

Gore refers to Steers in his 1995 memoir Palimpsest and at the time of the interview discussed how Hugh’s later works sadly “focused on the terror of AIDS, depicting the isolation and horror he experienced with the slow decay of his body.” A bitter reality for many that should never be forgotten or taken for granted.

Steers work has been exhibited at Whitney Museum of American Art, New York (2013); New Museum of Contemporary Art (1994); Richard Anderson, New York (1992); Midtown Galleries, New York (1992); Denver Art Museum, Colorado (1991); Albright-Knox Gallery, Buffalo, New York (1988); and the Drawing Center, New York (1987); among others. Steers’ work is in private and public art collections such as the Whitney Museum of American Art, the Walker Art Center, and the Denver Art Museum. In 1989, Steers received a Pollock-Krasner Foundation Fellowship.

His work was recently featured in the exhibition Art AIDS America curated by APRIL 2016 • A&U

Black Bag, 1993, oil on canvas, 45 by 38 inches Jonathan Katz and Rock Hush(114.3h x 96.52w cm). Courtesy Alexander Gray ka at the Tacoma Art Museum, Associates, New York • © 2016 Estate of Hugh Washington, in September 2015, Steers / Artists Rights Society (ARS), New York traveling to the West Hollywood Library and One Archives Gallery his painting Raft, 1991 (oil on canvas, 40 and Museum, Los Angeles, California, the by 30 1/4 inches) recalls bittersweet memZuckerman Museum of Art, Kennesaw, ories of boyhood; summer camp and an Georgia, and the Bronx Museum of the escapist fascination with a flotilla serving Arts, New York, New York in 2016. A as an island for castaways or champions comprehensive monographic catalogue of Steers’ work was published by Visual AIDS with the shoreline for the everyman just in sight. Steer’s subject holds his balance in 2015. blindly near the edge invoking a sense of Vidal further noted in the interview, doom or unsteady in the fight to stay afloat “He [Hugh] did a series of paintings of famin the canvas and in life. ilies sitting around at dinner tables where Similarly, Maroon Shed, 1991 (oil on everybody’s got a paper bag on their head. canvas, 60 by 60 inches) evokes a specific You remember those pictures,” he presses. sense of place as Raft in that both present Indeed, paper bags are a staple and recurring motif in Steers work. For example, resplendent, sun-renched greenery with

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Standing in the Time of Adversities, 1998, kiln-fired clay, 7 inches wide and 10 inches tall, 2 inches deep

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Morning Terrace, 1992, oil on canvas, 72 by 54 inches (182.88h by 137.16w cm). Courtesy Alexander Gray Associates, New York • © 2016 Estate of Hugh Steers / Artists Rights Society (ARS), New York A&U • APRIL 2016

A&U Gallery an calming openness through birds-eye perspective. We gaze upon two young men interlaced closely, faces and bodies meld through skillful perceptual technique employed by Steers known as figure ground.

A maroon shed alludes to a detached heart while good health and vitality return as realized in earlier or fantasized days. Repeating his top-down vantage point, the scene’s mood and subject matter also break free from the claustrophobic tenement confines of his more abundant indoor work.

A “lighter” airy moment in Steer’s brief departure offers more precise evidence of the artist’s noted expressionistic realist style punctuated with short, uniform brush strokes channeling the work of post-Impressionist Van Gogh.

“Steers has an imagination hijacked by history,” writes Dale Peck in his essay and introduction in the lovingly bound posthumous retrospective. “Virtually everything he painted—virtually everything that survives, anyway is a reaction to the disease that was stealing the lives of so many friends and peers, and that would eventually steal his own.”

Today, Steers’ masterful remembrances survive to help us recall and mourn if we so choose the darkest days of AIDS through kaleidoscope eyes. The sensuality and fortitude emanating from his work

Raft, 1991, oil on canvas, 40 by 30.25 inches (101.6h x 76.84w cm).

Courtesy Alexander Gray Associates, New York • © 2016 Estate of Hugh Steers / Artists Rights Society (ARS), New York lives on along with those individuals intercepted soon after Steer’s passing through breakthroughs in combination antiretroviral therapies.

In another essay in the monograph penned by Cynthia Carr, she quotes Carl George, a former lover, close friend, and the first, loyal patron of Hugh Steers’ exacting his critical legacy for primarily homosexual males, “tender depictions of gay men in quiet, intimate settings…

Hugh did for gay men what they [Balthus, Vuillard, and Bonnard] did for female beauty and sensuality.”

In his preface in the monograph, Visual AIDS Executive Director Nelson Santos

ponders the possibilities of the direction that Hugh Steers work might have taken, then sadly points to the fact that we will never know. A moment of speculation followed by introspection reminding us of our great loss in Steer’s work, him as a person along with so many other loved ones creep back into our minds as we ponder our valiant histories through Steer’s gorgeous bleakness.

For information about the availability and pricing of the work from the Estate of Hugh Steers log on to Alexander Gray Associates LLC at www. alexandergray.com.

Founded in 1988, Visual AIDS is the only contemporary arts organization fully committed to AIDS awareness and raising issues around HIV today, through producing and presenting visual art projects, while assisting artists living with HIV/AIDS. They are committed to preserving and honoring the work of artists with HIV/ AIDS and the artistic contributions of the AIDS movement. For more information about Visual AIDS and Hugh Steers: The Complete Paintings, 1983–1994, log on to www.visualaids.org.

Sean Black is a Senior Editor of A&U.

Futon Couch, 1991, oil on canvas, 56 by 60 inches (142.24h x 152.4w cm). Courtesy Alexander Gray Associates, New York • © 2016 Estate of Hugh Steers / Artists Rights Society (ARS), New York APRIL 2016 • A&U

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You, Me & Sunnie Rose Berger

Life Group LA is Magical, Practical and Essential for Living

by Corey Saucier

photographed Exclusively for A&U by Sean Black

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he room is approximately 400 square feet. It’s a basic white-walled room that you can rent from the city at a public park for a nominal fee. There are folded tables and chairs and a simple collection of fruit, water, and doughnuts in the front, near the glass-door entrance. It’s late in the evening and the moon has just begun whispering her eternal secrets to the stars in the sky; and they are twinkling and giggling at all the lovely things she says…. The room is packed with people: fifty to 100 folks of all races, sizes, genders, sexualities, and eye colors; and some of us are really sick…

The room is glowing. If you were standing across the street the shimmering glass windows would be luminous: glowing from the inside out like some giant lantern in the night leading the lost back home. And from the inside the room it is like everything is covered in this invisible sticky-sweet joyful phosphorescence—as if fairy magic, or angel mist, or soul dust was sprinkled generously all around. There is a buzz like the warm murmur of a dryer on its last cycle, and everyone is sitting in a circle. The circle is huge. The circle is kindergarten style: Everyone sitting on the white tiled floor, feet facing in, like some ancient tribal sharing circle. People are scrunched in together trying to make room; some people are holding hands gently, shyly—hands cradling each other with tender care. Some people are leaning their heads on the next person’s shoulder like you would your brother or your sister just before a good movie starts: Cozy, comfy, and content. And some people are quietly waiting for their turn…

There is an orange being passed around— rolled around. A ripe, bright navel orange about the size of a plush Valentine’s heart you would give to your dear darling beloved. And someone

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has rolled it in my direction. It moves quickly with purpose and then slowly gingerly giving me time to collect my thoughts. And then the room with all it bubbling energy slowly focuses on me. The moon quiets down to listen to what I have to say, and the stars look on tentatively. I pick up the orange. Pass it from hand to hand, hold it in my lap and fiddle with it nervously. I take a deep breath to speak, but almost immediately I begin to cry. I am overwhelmed with joy and gratitude—and the light and love in the room has seeped into my deep dark skin—and I can feel my T-cell numbers rise—and the words are falling from my lips faster than I can form them.

“Thank you for this, Sunnie,” I say finally.

“I have done this three times before, and every time I come back, I am affected the same way. There must be something fundamental that I am missing that you, this space, and this circle provides.” By now the tears are pouring from my face and I’ve started to snot; my words are barely intelligible. I’ve gone into full fledged ugly cry. I’m 5’10, 200 pounds with a big burly beard, and I am crying like a baby in front of fifty other people. “I have been HIV-positive for fifteen years,” I push on, “And have been a client with most of the billion dollar agencies that pass out red ribbons once a year, but I have never felt from an HIV organization something as beautiful and as healing as this weekend. It is invaluable.”

And the others in the circle are nodding in agreeing. “Thank you for this Sunnie,” I say again, wiping my face with the orange in my left hand.

And somewhat off to the side—not in the center of the circle, but not out of the circle either—she is standing next to a little cluster of rainbow glitter volunteers. And she is tiny and brown-haired and humbly unassuming with a smile that is warm and open like a really

APRIL 2016 • A&U

good hug. And she shrugs her shoulders and blushes; and takes it in, because I am holding the orange, and it is not her turn to talk. And I hope she hears me because the world needs more of this…. This big mean scary world needs more of what’s in this room. And more people like her.

She is the real thing.

Sunnie Rose Berger is the co-founder and executive director of The Life Group LA (www.thelifegroupla.org), a nonprofit organization started in 2007 specifically to fill the gap in care for newly infected, long-term survivors, their families, and loved ones. Sunnie Rose Berger is the real deal: After mortgaging her ranch for initial funding, she has been a one-woman grass-roots machine that is creating immeasurable affirming change in a community that thirty years later still needs undivided attention. The Life Group LA has created a program born out of the “Shanti Model” of compassionate presence called, “The Poz Life Weekend”: It is a two-day immersive support, education, and community building event for people infected or affected

by HIV that will change your life. You know how they are always telling us about “the old days”—about how HIV and AIDS education was personal, and honest; and how people-connected in a way that is usually reserved for family or something more than family?

You know the stories about healthcare being an act of sisterhood—and about basic humanity—and about collective personal integrity?

You remember when having HIV meant that you were dealing with something profound and meaningful on a spiritual, physical, and mental level? You remember when being a part of the HIV community meant that a collection of strangers and lovers and friends had our own best interest and the interest of our brothers at heart… Do you remember that?

I’m from a generation that does not remember that. I do not remember that.

And sometimes I think that leaves me out of the conversation—leaves my generation lacking some of the provenance that would deepen our current connection with the HIV community—because we are missing those things…. But Sunnie Rose Berger has created a space to see those things again. She and her army of beautiful, bubbly, hug-ready volunteers evoke that historic bit of magic that they make all of the AIDS movies about. We are not passed it. HIV and AIDS are still a thing!

The doctors have figured out a way to mostly fix our bodies. And that’s great—somersaults for that! But it turns out a lot of people are still hurting in other ways… I am still hurting in other ways.

The Poz Life Weekend starts early Saturday morning and by late Sunday evening I’d had a refresher course on meds and how

they fight the virus; up-to-date information on treatment and healthcare choices; sessions on meditation, yoga, self-help, how to navigate government financial programs, nutrition, sex and dating, addiction and harm reduction, and art. In two days a lot of practical resources are thrown at us, but what’s most important in these two full days, is the community of connection that is fostered. And one of the ways they do this is by breaking us up into these little “action groups” of six or seven strangers—paired with two facilitators. And in these groups, we process what has come up for us throughout the two days and—I’m just going to say it—most people are complete emotional messes! Life is hard and not everyone copes well. (And that’s putting it mildly.) But because of the stigma of “HIV” and “Gayness” and “Drug Use” or “Risky Sexual Practices” or whatever bit of story that has brought us to our HIV diagnosis, most people have to hide that brokenness… and so that brokenness never gets fixed. And it is compounded by the fear, shame, and very real danger (and loss) that can come with living with HIV. But what is magical about the Poz Life Weekend, is that built within its structure, Sunnie Rose Berger, and her motley army of volunteers, have offered a space for those bits of brokenness to be processed, witnessed, and healed. Little by little by little…. This is the thing that the prominent multimillion dollar systems of treatment are missing—that holding of sacred space, that offering of safety and friendship from other sero-similar equals who can share in your journey. Only we can do this for ourselves….

When I say “ourselves,” I mean you and me. I mean those of us who are sick and those of us who are well (and those of us who love one or the other). I mean those who get tested regularly, those who take their PrEP, and PEP, and HAART (And those who know that eventually they will become HIV-positive somehow anyway…because sometimes condoms just break). I mean you and me and the stars and the moon and the sun and those magical winged creatures who care so deeply about all the hurt and madness and love going on in this crazy little world of ours.... When I say “us,” I mean you and me and people like Sunnie Rose Berger who see a need, get off of their asses, and commit their lives to filling that need! I mean you and me and people who are willing to do something to help; because AIDS is not over. We need you. And when I say “you,” I mean YOU. I mean you.

I mean you.

I mean you.

Corey Saucier writes A&U’s Brave New World column.

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Finding Your

Gate to Life Motivational speaker Latresa Rice talks about growing up as an AIDS orphan, her AIDS activism work and new book

by Alina Oswald Photos by Chonita Nichole/Do Dream On Photography

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on’t be stupid all your life. At some point, get a clue.” The words of Latresa Rice’s grandmother traverse the motivational speaker’s new book, as if to reinforce the idea behind reaching our goals and living the successful life we dream of. In that sense, Gate to Life shows, as its subtitle points out, that, indeed, “You Choose the Life that You Shall Experience.” But Gate to Life does much more than that. This enlightening, educational and inspiring read is also a tell-it-like-it-is kind of read, heartbreaking, but also hopeful, offering the author’s own account on her life and her (in many ways) unique take on HIV and AIDS. Losing her mother to AIDS-related causes at a very young age, Rice was raised by her maternal grandmother who made sure her granddaughter didn’t only get a clue and find the gate to her life, but also that she found the gate to a prosperous, productive life that, in turn, would inspire and enlighten others, too. And her grandmother would be proud to see Rice now.

Latresa Rice is not only an author, AIDS activist, and motivational speaker.

She uses her Detroit-based company, It’s Time Enterprise, as a vehicle to help others, in particular young individuals, find the gate to their own successful lives. As noted on its website, the mission of It’s Time Enterprise is to “empower AIDS orphans, youth and others who have experienced hardship, to use their God-given talents to succeed in life

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despite their upbringings, societal pressures and many other barriers that attempt to block them from reaching their destinies by sharing wisdom through public speaking and providing them with the tools necessary to succeed.”

And that’s still not all. Rice is not only the image of success, but also one of optimism. It is impossible not to feel hopeful and optimistic, and also enlightened when in her presence.

I got to get a taste of that surge of positive energy when I called Rice to talk about her new book, and also her inspiring work.

As an AIDS orphan, Rice has a unique perspective on the pandemic.

She explains that right now statistics mainly speak of people living with HIV or AIDS, and yet “we don’t even know the percentage of those who are considered AIDS orphans.” She explains, “AIDS orphans are someone who lost one or both parents due to AIDS-related causes before they were eighteen yearsold. [They don’t] have to have the disease or be in orphanages or things like that [to be considered AIDS orphans].”

It could be extremely traumatizing for a child, having to watch his or her parent transition from lively, vibrant and active to being sick and, ultimately, dying. And that child cannot really tell anybody about it, for fear of being portrayed differently…like, for example, “some people might not want to touch you,” as Rice points out.

Sometimes that kind of trauma shows itself as anger. As a child, Rice

was angry all the time, not necessarily knowing why. Not knowing, at least at the time, that she was depressed having lost her mother at such a young age.

And yet, as a child, she couldn’t just say that her mother had died of what later on she learned was HIV/AIDS. She recalls one day, when she was asked, in class, to do an assignment that called for her to go in front of her class and talk about her mother, her parents. And A&U • APRIL 2016

she remembers being in tears and not wanting to do that assignment, because then she’d have to keep replaying and remembering what had happened, over and over again.

“I didn’t know what [my mother] died of,” Rice reiterates. “I had to figure it out. We were told that she died of pneumonia. It wasn’t until I’d seen my dad engaging in a sexual act with someone I thought was my uncle, when APRIL 2016 • A&U

I was about thirteen. And then I had a health class in ninth grade, and I started piecing it together. Because in health class the teacher said that someone who dies of AIDS might have something like pneumonia. For me it was a trigger….

And that’s how I found out that [my mother] had died of AIDS.” That was a time of discovering a lot of things, as Rice explains. One of those things was that her father also had the

virus.

Some say time heals all wounds. It might be true. And yet, we carry the scars of some of these wounds with us, inside of us, for our remaining lives. Some experiences remain forever imprinted in our memories, if nothing else but as tiny yet meaningful footnotes.

Time, life, and also her grandmother’s advice have propelled Rice toward the successful life she made for herself. She did

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take her grandmother’s advice to heart, and did get a clue. As for her grandmother’s famous words, “Don’t be stupid all your life. At some point, get a clue!” what that means, Rice explains with a smile in her voice, “it means, you may mess up, you may have made some foolish mistakes, but don’t allow that to be an excuse for you to [keep you from pursuing your dreams].”

For example, she remembers wanting to go to college, but not having the money to see her there. Taking her grandmother’s advice to heart, she decided she might not have the money, but that she had the wisdom to figure out how to reach her goal. “You need to figure out what is going to take to get there,” she reiterates, “and work the clues you get. You can’t just say I can’t do this or that. Those are excuses and are not acceptable. You get the clues necessary and make some changes, and it will happen for you. So, based on that, the best advice [to offer others] would be if you see that you’re going down the wrong path and you desire a change, than you do what it takes to be that change.”

Her grandmother also encouraged her to never give up, and to pursue her dreams. Today, that’s exactly what she advises others, in particular the youth.

Nowadays, Rice works with young individuals to inspire and empower them to find the gate to their own success. “For me it’s so important to focus on the youth because that’s our future,” she explains.

“To ignore them means to ignore life itself.”

A lot of times the youth are ignored, especially when they don’t have any families. A lot of

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times today, they go through things that adults did not have to go through when they were young. Social media is one of those things. Social media can be used to promote a cause, show off one’s work, but it can also be used in a harmful, damaging way. If a student does something in class, chances are that it will be posted on social media, going viral at times. Sometimes that can be quite damaging for the student and/or others. “Today’s youth are dealing with a lot of new issues, but also [with] a lot of issues that we’ve dealt with,” Rice adds. “[I’m] focusing on the youth to make sure that they’re not being ignored, and that they’re being heard and empowered, and know that they can overcome these things. They don’t have to become statistics.”

Rice does everything in her power to make sure that young individuals do not become statistics in many ways, in particular when it comes to HIV. And speaking of HIV and HIV prevention in particular, Rice shares her excitement over the availability of PrEP, “a drug that is ninety-nine percent effective at preventing HIV,” she calls it. “It blows my mind that many of us are not aware [yet] that this even exists.

And, you know, [HIV] is preventable. Abstinence is always the best,” she adds, “but in the same time, if you’re not going to be abstinent then the least you can do is engage in safe [sexual] practices to protect yourself and others.

“The message of the book is that our actions affect more than just us. A lot of times we say ‘It’s my life. I can live it the way I want to.’ But your life is interconnected with everybody else’s life. If you do something that affects you, it might affect everybody else in the society, because it’s not only you that exists.”

That’s true in so many other ways.

For example, each person comes into this world with different gifts. If someone chooses not to share his or her gifts, then we all feel the void.

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What I personally found remarkable about Latresa Rice is not only her inspiring and empowering story, but her personal take on life and staying positive, always uplifting not only herself, but others, too. And yet, she’s the first to admit that she, too, does get down at times. “But the longer you are down, the longer you stay down,” she says. “I limit the time that I’m down…to five to ten minutes. If I’m stressed out and upset then I may

ence that life.”

In order to stay focused on her goal and stay positive about her life, she sometimes uses “haters ringtones.” Available on Amazon, and also on CD Baby, haters ringtones are one-minute ringtones that one can use as an acknowledgment that someone who wants to say something negative is calling, about to spoil your day. “You can apply the ringtone to their phone number, so you know [their call] is coming,” she reconfirms.

On the It’s Time Enterprise website, Rice describes the need to have a haters ringtone in a way that might put a smile on someone’s face: “Are too many haters calling you? Your haters are your #1 fans. Know when your haters are calling and thank them in advance before you answer the phone!”

Truth is that sometimes blocking the caller is not possible, because sometimes the caller might be a relative or family member—hence, the use of haters ringtone.

“The mere fact that they’re using their free time to call you [and tell you how bad you are] is an indication of how valuable you really are,” she says. She also encourages people to get themselves ready for such calls and to turn this negativity into something positive, in order to encourage themselves. “You listen to the lyrics of the haters ringtone.

You recite the opposite [message] in the mirror to yourself everyday to prepare yourself to push that [incoming] negativity away. You prepare yourself, as if you’re walking up the stairs, rising higher and higher on your path. [Because after all] you choose the life you want to live.”

do something that I know is relaxing me—listen to jazz or classical music, also I pray.” She re-emphasizes, “I do what I need to do, but I know one thing. If I stay in that state then nothing will get accomplished. The longer you stay in that depressed state, the longer you will be there.” She goes on to say, “You choose the life that you want to experience. If you want to live a life of abundance, then you have to do the things necessary to experi-

Learn more about Latresa Rice, her inspiring work and her book Gate to Life, by logging on to www.itewisdom.com. Check out haters ringtones at www.cdbaby.com/cd/latresarice2.

Hair and jewelry by Latosha “Lyssin” Rice of Lyssin’s Couture Salon Suite. Makeup by Tiffany Elder of Aisha Tiffany Studios.

Alina Oswald interviewed artist and curator Steed Taylor for the March issue.

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BLISS

Live Your

Actor Leslie Jordan Hosts a Fundraiser for San Francisco’s Maitri, an AIDS Hospice

by Larry Buhl

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ne of only two AIDS hospices left in the United States is about to turn twenty-nine, and while it might surprise some that nearly all hospices have disappeared, others who assume HIV/AIDS is a crisis that’s over and done might be shocked that there is still a need for such end-oflife services.

There is a great need. Fortunately for those people with AIDS who need residential care in San Francisco, Maitri (pronounced “my-tree”) isn’t going anywhere.

Right now Maitri preparing for BLISS, its largest annual fundraising gala. BLISS 2016 will be hosted by out and proud comic Leslie Jordan, who won an Emmy for best guest actor in 2006 for his work on Will & Grace.

Jordan has had a long history of working for AIDS-related causes, but he admits his efforts didn’t always go smoothly.

In the eighties Jordan was volunteering for Project Angel Food in Los Angeles when his supervisor reprimanded him for taking too long delivering meals to AIDS survivors’ homes.

“We had to deliver four meals a day but I was chatting with the clients and kept getting delayed,” Jordan told me. “I was fired from a volunteer job because I talked and joked too much. Can you believe it?”

Knowing Jordan, one could easily believe it.

These days Jordan has been using his gifts of gab and wit in building a parallel career hosting HIV/AIDS fundraisers. Last year he was given the HIV Partner for Life Award, one of the Steve Chase Humanitarian Awards, for his work with HIV/AIDS charities. Last year he hosted forty-four events across the country, many of them benefitting

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LGBT or HIV/AIDS organizations.

Jordan made a splash, pun not intended, by throwing a cup of iced tea—not hot coffee, he emphasizes—at three men shouting anti-gay slurs last year at a Starbucks in West Hollywood.

The incident was reported by TMZ and raised Jordan’s stature (pun not intended to emphasize Jordan’s 4’11” height—he makes fun of

that himself) as an angry gay activist. He set the record straight (pun again not intended) by saying that he regretted losing his temper.

A&U • FEBRUARY 2016

Jordan photo & Maitri photos courtesy Maitri

He told me his heroes—Carol Burnett and Lily Tomlin—keep their cool no matter what.

Then again, Jordan’s heroes are funny and so is he. Whether he brings up the Starbucks incident at BLISS, or not, the audience is guaranteed to laugh, even with the understanding that Maitri’s ongoing mission couldn’t be more serious.

Compassionate Care BLISS, though it brings in only a small part of Maitri’s $2.5 annual operating budget, is critical for the residential center to continue in its mission that no one with AIDS should have to suffer or die alone, according to Maitri’s executive director Michael Smithwick.

Despite the fact that HIV/AIDS has been a manageable disease (for most) for almost twenty years, people are still dying of AIDS. An estimated 13,712 people with an AIDS diagnosis died in 2012, based on the latest data from the Centers for Disease Control. However, correlation is not causation, and estimating deaths from AIDS alone is tricky. The CDC points out that deaths of people with an AIDS diagnosis can be due to any cause and may or may not be related to AIDS. Still, it’s understood that life-saving HIV meds don’t work for everyone, and not everyone can access them. And more than 1 in 8 Americans living with HIV are unaware they’re infected, according to the CDC. That means some people with HIV are going to face a death not unlike so many did in the darkest days of the 1980s and ’90s.

In the early 1990s, there were five AIDS hospices in San Francisco.

For the last ten years there has been just Maitri, one of only two AIDS hospices in the U.S., with fifteen beds and a long waiting list.

Maitri’s origins go back to 1987, when Issan Dorsey, a drag queen and IV drug user turned Buddhist monk, opened the Hartford Street Zen Center for men dying of AIDS. Nearly thirty years later, the center, renamed Maitri, offers twenty-four-hour nursing services, three hot meals each day, comfortable bedding and home-like accommodations for its fifteen residents, all challenged with advanced AIDS. APRIL 2016 • A&U

Those who are actually dying of AIDS these days tend to fall into one of two subsets of the population: they have waited too long for a diagnosis and treatment, and long-term survivors who suffer from clinical fatigue, or “old AIDS” as some call it.

“I hate to call it a trend but we are seeing more people who have cumulative effects of the virus and medications that have taken a toll on the body,” Smithwick says. “We are increasingly seeing seniors who have lived a good chunk of their lives with HIV, and now their bodies are breaking down.”

I wondered about the benefit of that care tailored for people with HIV/AIDS. After all, if someone needs palliative or endof-life care, does it really matter where they receive it? Smithwick says it does matter because Maitri residents simply feel more comfortable knowing everyone else is in a similar situation (dying of AIDS-related illnesses).

But not everyone comes to Top: Michael Smithwick, executive director of Maitri Maitri to die. Approximately thirty percent come to Maitri for Left: Volunteers and residents celebrate a birthday end-of-life care, Smithwick tells party at Maitri. me. Others arrive to be medically stabilized so they can go home brings him or her to Maitri. for a while, or go home permanently. PriSmithwick recounts a homeless man ority is given to those who need end-of-life who got lucky when a bed opened up two care, however, and beds are given first to days before Christmas. “He was able to those with spend Christmas Eve here, where he could the fewest open presents with the other residents. resources Christmas is a big deal here.” who are livSmithwick says less than twenty pering in the cent of Maitri’s annual operating budget most dire goes for administrative and fundraising situations. expenses, meaning donations go directly “Litertoward providing care. ally people In addition to Leslie Jordan, BLISS come here 2016 will feature ballet troupe Man Dance who would Company and Oakland jazz vocalist Branice be dying on McKenzie. Guitarist Andre Morgan will be the street,” playing at a VIP reception. The event will be he says. held on Sunday, May 1, at the Mission Bay FourConference Center-UCSF starting at 4 p.m. teen of Mai- The sponsorship packages start at $1,000 tri’s 15 beds and individual tickets are $225. are reserved for HUD-defined low-income BLISS 2015’s 300 tickets sold out well people and represent ninety percent of San in advance, and Maitri is telling supporters Francisco’s non-institutional hospice beds, to purchase their tickets and sponsorships the organization says. early this year.

Maitri’s program director is networked into the HIV/AIDS community, including More information can be found by logging on to: San Francisco General Hospital’s Ward 86. www.maitrisf.org/bliss-2016-is-kicking-off.

On occasion a social service organization will find a homeless person with AIDS and Larry Buhl writes A&U’s monthly Hep Talk column.

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> TWO FOR THE ROAD > Activist Acting Duo Teddy & Milissa Sears Spin Dollars Toward the Epidemic and In Tandem They Raise the Bar for Every Celebrity Couple

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

K

nock, knock, knock. Hmmm.

Nobody’s home? Do I have the correct address? I am a few minutes early. I descend the stairs to the narrow alley-like street, typical of L.A.’s beach cities. The early afternoon sun is warm and radiant, as I glance down the lane. Two blocks away I see a couple approaching. Suddenly, the man raises his arms skyward and waves. Could it be Teddy and Milissa Sears?

It is! Their arms are laden with boxes of pastries from their favorite local bakery.

Teddy’s in town for the weekend from Vancouver, Canada, where he shoots the celebrated TV show, The Flash. He portrays a DC comic book character, speedster Jay Garrick, and his doppelganger Hunter Zolomon, known as Zoom, a supervillain. Also, he appears as Dr. Austin Langham in HBO’s Masters of Sex. Milissa is currently involved with pilot season, hoping to land a television show. (Pilot season is the time actors hope to be cast in a pilot episode of a proposed television series for network consideration.)

The couple live two blocks from the Pacific Ocean. As we enter their apartment, I’m instantly enveloped by the scent of roses. Milissa indicates it’s from a candle.

Fresh flowers in vases abound, strategically

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placed among their mid-century modern furniture. There’s a spinet piano against one wall, and a retro-looking turntable and family framed photographs atop a walnut table. The color scheme is a range of grays.

Their home is warm and welcoming.

Teddy and Milissa are grateful for their successful acting careers, but they have also given back by raising a bundle of money for amfAR by participating in all six annual Keihl’s LifeRides. They were joined by other bikers that included Jay Ellis [A&U, May 2015], Kevin Robert Frost (amfAR’s CEO), Gilles Marini [A&U, October 2015], and Tricia Helfer [A&U, December 2012].

“We get to see beautiful parts of the country,” Teddy enthuses while brewing tea in the kitchen. “We’re raising money for a cause we care a lot about.” Traveling and volunteering are their passions. Two years ago the LifeRide ended on New York’s Governor’s Island, where the AIDS Memorial Quilt was displayed and the names were read in a moving ceremony.

“Seeing the Quilt just made it so much more personal. Each little patch was made with so much love. A lot of tears were shed that day,” says Milissa, from the kitchen, Teddy adding, “It was very powerful. Seeing artifacts that were significant for each

person, stitched onto the Quilt forever.

This brought it all home.”

After laying out a smattering of bitesize crisped-rice marshmallow squares, powdered almond drops, and oatmeal cookies, Teddy and Milissa set themselves informally on the floor near the coffee table. I am planted on their sofa. Teddy is handsomely bedecked in light beige denim and a casual collared Napoleonic blue shirt, untucked with sleeves rolled up. Teddy sports a cap with the logo “Star Laboratories,” the company that The Flash works for to help fight crime. Milissa’s becoming in tight semi-ripped blue Jeans and a rounded neck dark blue sweater.

Both are barefoot.

“We need to keep the discussion going about AIDS,” presses Teddy, pouring tea for us all. “That’s what we like about Kiehl’s. It keeps the epidemic in the headlines, especially in the towns we ride through. We need to keep the money flowing for research to cure this baby by 2020, which is amfAR’s goal.”

Kevin Robert Frost, CEO of amfAR, has motorcycled alongside the Searses for several years. “The Kiehl’s LifeRide is a grueling ten-day motorcycle ride,” Kevin specifies, “which raises funds for amfAR and generates AIDS awareness. These two A&U • APRIL 2016

FEBRUARY 2016 • A&U

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A&U • FEBRUARY 2016

are of the most genuine, big-hearted people you’re likely to meet and I’m privileged to consider them friends. They are committed supporters of the fight against AIDS. I’ve no doubt they’ll be shoulder to shoulder with us until our job is done.”

Indeed, they plan to ride again this year.

Milissa first learned about the epidemic during an elementary school assembly in her hometown of Barrington, Illinois, forty miles from Chicago. Afterwards the students collectively sang, “We are the World.” “I was thinking about this on the walk home just now,” she says. “When I was little, the big topic of conversation was Ryan White. I was not able to fully grasp the significance of his plight, but I realized that he was someone who could have been my classmate and he’s struggling with this illness all because of a blood transfusion,” remembers Milissa. She sits cross-legged, fingers interlaced, her face intense. “The fact that it’s still here, a massive pandemic that has not been eradicated..…” she trails off, questioning.

Teddy, a few years older than Milissa (they both share the same April birthdate), first became aware of AIDS while attending an all-boys school in his hometown of Bethesda, Maryland.

“I remember going through sex education when AIDS was all over the news. Hearing the teachers talk about HIV scared me. It made all us kids more cautious about our choices.” He looks up. “I remember being really taken by it. What is this disease that we can’t seem to eradicate? I was APRIL 2016 • A&U

captivated by the mystery,” he notes.

“It’s deeply embedded into my childhood memories.

Teddy discovered amfAR when he wrote a term paper in high school, “Should Condoms be Distributed in Schools?” “I was sixteen and I was all excited about wearing a condom!” he chuckles. “amfAR stuck with me because I thought, Why are some letters small and others caps? I was always getting it wrong.”

He goes on. “AIDS is not the disease du jour. Zika is the disease du jour and it’s scaring a lot of people.” Their antique mantle clock chimes. He scratches the back of his head and proceeds. “HIV and AIDS has been around for a long time.

Maybe it’s not as terrifying as it used to be, but,” he pauses succinctly, “the disease is still a killer.”

Milissa appends, “Kevin [Robert Frost] and I had lunch a couple months ago. He was telling me that AIDS research to find a cure will also lead to treatments for other autoimmune diseases.” Adds Teddy, “All the more reason to throw our weight behind it.”

“Even though I haven’t lost anyone to the disease,” Milissa points out solemnly, “I feel it on a deep level.” Teddy resonates, “We’re all just one degree of separation from someone who’s battling the disease. It’s all around us....” There’s a collective silence when deafening air horns shatter it. Teddy informs me there’s a local surfing contest today.

Besides LifeRide, the pair has been involved in other AIDS fundraisers, as well.

Teddy hosted a fundraiser in Dallas called Two X Two For AIDS And Art. A total of $8.5 million was raised for the Dallas Museum of Art and amfAR. Teddy plans to host again this October.

They’re also involved with in IAVA (Iraq and Afghanistan Veterans of America), which was founded by, Paul Rieckhoff, Teddy’s former New York roommate. Milissa serves on the Los Angeles Leadership

Council for NRDC (National Resources Defense Council). She attributes her activism to her upbringing, especially her mother whom she considers a gigantic influence. Milissa rises to grab one of the arranged framed photographs off from the cabinet and proudly shows me a picture of her mother on the beach in a family shot snapped at Teddy and Milissa’s wedding.

The Sears met as neighbors and have been married for over two years (they got hitched near the seashore, not far from their abode). Teddy proposed to her at Rome’s Spanish Steps. It was early morning before any crowds gathered. The scene calls to mind Willie Wyler’s romantic film, Roman Holiday, written by Dalton Trumbo and starring Gregory Peck and Audrey Hepburn (one of Milissa’s favorite actors).

When asked what attracted them to each other, Milissa stares into Teddy’s steel-grey eyes and replies, “Teddy feels like home. He has a huge heart, and he’s my very best friend.”

Looking at me, Teddy offers, “She’s warmhearted, easy to talk to, and I feel comfortable in her presence.”

He takes a beat, glances over to Milissa and says with elated emotion, as if he had a boyhood crush, “I just love this woman!”

One thing’s for sure, they’re hardly the stereotypical Hollywood power couple. Instead of attending lavish parties, Mr. And Mrs. Sears prefer to stay home and binge watch House of Cards, Veep, or Homeland. They also enjoy cooking together while listening to Frank Sinatra.

They cherish their sanctuary, where they’ve resided for six years.

Teddy states simply, “I like to wake up, go to work, and come home.” He means it.

“Acting is a job like any other. Home life is everything,” he fervently insists. “Things that matter most don’t change whether you’re making a truckload of money or whether you’re just skating by. I’m so anti-seeing and anti-being seen. I don’t give a shit about any of that stuff.”

“AIDS is not the disease du jour. Zika is the disease du jour and it’s scaring a lot of

people...HIV and AIDS has

been around for a long time. Maybe it’s not as terrifying as it used to be, but, it’s still a killer.”

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He scoots back a few feet to prop himself up against the sliding door that leads to the balcony, with its far-reaching ocean view.

“An added bonus of this industry is if we can succeed in our work and develop any sort of a profile that we use that platform to draw attention to special causes.” Milissa, her glittering honey-green eyes heightened, sums up, “To be of service.” Teddy concludes, “You’ll never catch me at The Ivy [a celebrity-swarming Beverly Hills restaurant] or any of that stupid shit. Who fucking cares?!”

He then quickly eclipses my journalistic doubt, “And you can print that.”

After graduating from University of Virginia in Charlottesville with a degree in Business Management, Teddy moved to New York City. He had no desire to be an actor. “When you come from Chevy Chase, Maryland, you tend to seek a career in business, commercial real estate, or government. Nobody does anything creative and pays the bills where I’m from and not that I knew growing up.”

Just then, one of their two cats, Motor, ambles into the living room. Teddy greets his friend as Motor settles down to sun himself, near the patio door, on the pale grayish carpet.

Teddy continues. “I fell backwards into acting through working with a modeling agency,” he explains. He heard about an audition while at the agency and decided to go. He landed the part!

For two years he appeared on the soap, One Live to Live. Then he was fired. Fired? Yep. “There was a regime change, but the long and short of it was that I just wasn’t very good and they didn’t know what to do with me,” he soberly replies, taking a bite of the cookie.

“Once I got fired I realized this is what I wanted to do. I really doubled-down and got some training because I really didn’t know what I was doing back then.

I needed to get some craft, as they say.”

Teddy’s debut was in an episode of Sex and the City titled, “The Real Me,” where Carrie becomes a fashion model and trips, face first, on the runaway. Margaret Cho [A&U, September 2000] and Jose Llana [A&U, August 2008] co-starred. Teddy was in the first row of the audience “oowing

scene was hard to watch,” says Milissa with alarm in her voice, clinching her fist and tightening her facial features. “It… was…gruesome.”

Since he has completed his character’s storyline on The Flash, Teddy will be performing in a TV reboot of 24, for Fox.

“An added bonus of this industry is if we can succeed in our work and develop any sort of a profile that we use that platform to draw attention to special causes.”

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and ahhing,” reacting to Carrie’s stumble, no lines. Since then, he’s racked up credits on Ugly Betty, Las Vegas, A Single Man, Law & Order, Torchwood, Blue Bloods, Mad Men, and the inaugural series of the anthology American Horror Story, playing Zachary Quinto’s husband. SPOILER ALERT: He dies horrifically in the end. “His death

His latest film, Nine Lives, with Jennifer Garner, Kevin Spacey, and Christopher Walken, will be released later this year. He also had an indie film called Liv due out.

Teddy has no relation to the famous Sears and Roebuck department stores, but his relatives can be traced back to the Mayflower. In 1912, his great grandfather won A&U • APRIL 2016

event photos by Sean Black

Olympic Gold in pistol shooting in Stockholm, the same Olympics as Jim Thorpe competed. In 1956, his aunt won Bronze in the 100-meter butterfly in Melbourne.

Athleticism is in the genes. “I’m riding their coattails,” he boasts modestly. Teddy once had aspirations of becoming an Olympic swimmer, but he hung up his competitive Speedos at the age of fifteen. He preferred team sports and grew up playing ice hockey and football, and then played water polo and football in college. Today he still enjoys ice hockey at the local rink.

Teddy can best be described as having equal healthy parts of male and female energy. His acting heroes are Allison Janney and Sarah Paulson. When asked when he last cried, he replies, “while watching the film Rudy”—that 1993 movie starring Sean Astin as the underdog who beats the odds to play college football. Pondering, he reveals, “The older I get, the softer I seem to get—and I’m all for it.” Teddy’s a man’s man joining the exclusive club alongside the likes of Spencer Tracy, Ryan Reynolds, and George Clooney.

Milissa, whose ancestry is half Yugoslavian and half English, Italian and French, is named after her Dad’s sister. Milissa moved to Los Angeles to attend USC (University of Southern California), where she received her BA, studying theater and French.

After graduating, she pursued her lifelong dream of acting. Her debut role was playing “Nervous Girl” in the comedy film The Iron Man. She later appeared in Sympathy for Delicious, Masters of Sex, Criminal Minds, and Law & Order, and has the recurring role as Karen Lisbon on The Mentalist.

“Would you like more tea?” asks Milissa.

Affirmative, I reply. While she heats more water, Teddy replenishes the nearly eaten treats.

Teddy took his first HIV test when he was in his mid-twenties in a Chelsea clinic

APRIL 2016 • A&U

in New York. It took a week to get results! “I was always safe, but I was a little worried. The waiting was nerve-wracking.” Milissa was first tested at USC health Right: The Sears at amfAR’s Inspiration Gala Los Angeles 2015 Bottom: The Sears on Governor’s Island, at the end of the fifth annual LifeRide

clinic.

Combing her fingers through her bouncy shiny brown hair, she says, “I believe people are talking about the disease in a much more open and honest way now than they did when I was growing up,” she surmises.

“It’s not a coincidence that we are much closer to a cure.”

The petite thespian believes that to be fully educated about HIV, one has to be tested. Teddy, with a glow in his eyes, strokes his chin, and quips, “I think it’s kind of sexy in a way for a couple to be tested together.”

Milissa nods and firmly affixes his point with the weight of her insight, “Trust is so important in any relationship. Essentially, you are putting your life in someone else’s hands.”

She shifts position, leaning back, supporting herself with her hands on the floor, and legs stretched out in front of her. “Everyone needs to have open dialogues about this disease,” she demands. “Two of my girlfriends, Lauren Paul and Molly Thompson, run an organization called Kind Campaign. I volunteer and help them when I can, and what I’ve seen at their assemblies is that these young girls appreciate honest, open discussions.”

“During one NPR [National Public Radio] program, I heard professionals say that the dialogue needs to start at a young age, in the

pediatrician’s office. Some parents are not ready to handle this and so doing it at the doctor’s office is a safe environment. When the kid does reach that age of exploration they already have the information.”

As the afternoon sun wanes, I gather my belongings. Milissa carries out empty plates and teacups to the kitchen, while Teddy playfully wrestles with Motor. Their other feline, another rescue cat named Trouble, strolls out of the bedroom into the kitchen. Milissa picks her up and cuddles. As I prepare to leave, Milissa keenly turns toward me, her focus as bright and direct as a cat watching a bird. “I hope the epidemic will be all over soon,” she says in closing. Teddy, now standing near us, adds, “I’m excited to keep this train on the track and move forward, riding on amfAR’s mission. One day we’ll read about this disease in history books.” In a line that could be straight out of The Flash, Teddy wraps, “That’s...the goal.”

For more information about amfAR, log on to: www.amfar.org. For more information about Kiehl’s LifeRide, visit: http://www.amfar.org/liferide/.

Hair and makeup for Milissa Sears and hair and grooming for Teddy Sears by Streicher Sisters at STRIIIKE. Hats off to Jennifer Eagle for her encouragement, interest, and support.

Dann Dulin is a Senior Editor of A&U. He interviewed Aileen Getty for the December 2015 cover story.

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Honoring

Our Experience

Knowing that Love Heals, Gregg Cassin Helps Organize Communal Experiences for Long-Term Survivors

by Hank Trout

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in 2013 and then started working with Saratoga Springs on the HOE retreats,” Gregg told me.

Honoring Our Experience has built on the realization that the AIDS epidemic had a deeply profound effect on an entire generation. During the height of the epidemic in the 1980s and ’90s, in the face of being ignored (at best) or ridiculed (at worst) by our government, shunned by medical caregivers, abandoned some times by friends and family, we discovered that our one best hope for the dignity and care we deserved was us—ourselves and the community we could build. Together we suffered incalculable loss and unfathomable grief: we lost friends, lovers, family, partners in life, co-workers, and for some of us, entire extended families to the epidemic. The plague decimated an entire generation.

As Gregg often points out, for many of us, both as individuals and as a community, along with that grief and turmoil came a renewed sense of purpose, of connection birthed by necessity. “As an embattled community came together, we were in awe of our courage, compassion and strength,” he has written. “This community had been discarded, shamed, maligned, hated, A&U • APRIL 2016

photo by Michael L. Kerner (www.kernercreative.com)

T

erry was twenty-six when he was Francisco in 1996, Terry’s diagnosed with HIV in December life repeated familiar, de1994. He had been feeling under pressing patterns. “I tried the weather with flu-like sympto meet guys online for a toms on and off for about five long time. And every time months when he went to see his doctor at I told one of them that Boston’s Fenway Community Healthcare I’m positive, either on the Center. When his doctor gave him the HIV phone or in person, they diagnosis, Terry didn’t believe it. He was disappeared, and I never shocked. He had been testing regularly ever heard from them again.” since he had come out five years earlier and As date after date failed, all those tests had been negative. He couldn’t Terry’s isolation and lonelibe HIV-positive. He insisted on a second ness seemed endless. test.

In October 2015, Steve, The second test confirmed Terry’s staa friend whom Terry had met at a Califortus: He was HIV-positive. nia Men’s Gathering gave him a postcard He received the test results just two days advertising, on one side, a dance celebrating before his parents were due to arrive from long-term survivors of HIV/AIDS and, on upstate New York to celebrate New Year’s the other side, a December retreat for longEve with him. He stumbled through the term survivors at Saratoga Springs, both weekend in a state of shock and disbelief. sponsored by a group called Honoring Our Shock and disbelief soon gave way to Experience. depression, as he became more isolated, Gregg Cassin, the founder and guiding and grew lonelier, as light at Honoring Our a result of the stigma Experience and chief “Thank you for an amazing restor- facilitator at the HOE rehe faced. “I had few friends,” he told me, ative and healing weekend…. My treats, had been facilitat“and they were all ing large groups for thirty older guys. When I told life is richer and my heart is fuller years, beginning in 1989 them about my diagnobecause of it. Love does heal, with a group called The sis, I immediately felt Circle. Honoring and you create the space for it to Healing like an outcast. They Our Experience was born happen.” E. Connelly began treating me as if, out of a sense that the oh well, you won’t be here community was ready to much longer.” Six months after his diagnosis, reflect on and talk about the profound and convinced that he had only a year or less to unique experience of having lived through live, Terry told his parents about his diagnosis. such a painful and challenging time. “After “They ended up being okay with the inforseeing the movie We Were Here, I felt like it mation,” he told me. “Accepting, yes. But not was time to create a space for the comwanting to talk about it. Still to this day not munity to come together and to do exactly wanting to talk about it.” what the title says—honor our experience.

For many years after moving to San I created several large gatherings at MCC

photos courtesy Gregg Cassin

outcast and ignored. But we came together one in December,” Terry told me, “but I in the most beautiful and powerful way. We wasn’t sold on it. I just wasn’t sure that were selfless angels when needed, brilliant it was right for me.” Exacerbating his strategists when needed, and ferocious longtime loneliness and isolation, Terry attack dogs when needed. We needed every had just ended a seven-year relationship talent to respond to this war.” Honoring with another positive man. Still, he was Our Experience harnesses that courage and intrigued by the promise of an opportunity compassion and strength to help long-term to rejoin and re-involve himself with the survivors, both HIV-positive and -negative, HIV community. deal with the unique The postcard prochallenges of aging vided a phone number ”I had an AMAZING life changing to call for information, with HIV individually experience at the Honoring Our so he called Gregg and as a community.

“Long-term surviCassin to talk. “Gregg Experience retreat this past vors are now dealing was amazing on the with issues of isolation, weekend… I was able to drop walls phone! He talked depression, economic I had put since I first tested HIV+ with me for over half turmoil, deep grief an hour. He told me in March, 1980, 36 years ago….” everything I should and a loss of hope. But profound healing is expect at the retreat.”

A.C. Jackson available to us through Terry still waivered, recreating community. he said, until Gregg That is what makes the Saratoga Springs said, “Look, these retreats are designed for retreats so valuable, so joyful. Through people exactly like you.” “That,” Terry said, sharing with each other, we not only learn “made up my mind.” about the well-documented challenges When I asked Terry if the retreat lived facing long-term survivors, we learn and up to his expectations, his eyes lit up and practice the tools for our own renewal,” his smile spread. “Oh! It was so much better Gregg said. The retreats are both informathan I expected!” He got his first sense of tional and experiential, providing activities genuine community at the retreat as soon as (heart-circles, small group discussions, muhe arrived. He had offered his services as a sic, movement, writing exercises) carefully driver in a carpool from San Francisco to Saradesigned to foster a sense of community, of toga Springs, and because his car had room, belonging to a strong, loving community.

“We learned from our response to the epidemic that joining together in community can be profoundly healing. But we gather for other reasons as well, some shared, some personal. We honor one another and what we experienced as well as remember those we lost. We join because being with one another can help make sense of our experience, both the stories of suffering but also those of the wisdom we gained.”

As the attendees at the retreats can attest, “Love Heals” is so much more than a slogan for the group, it is the spiritual basis for everything they do.

Although we tend to think of most long-term survivors as gay men of a certain age, the Honoring Our Experience retreats extend a special invitation to women, people of color, trans-people, young adults, elders, he was asked to share the ride with an older and HIV-negative people, gay and straight, transgender woman who needed to bring who have lived through and been profound- both a wheelchair and a walker to the retreat. ly impacted by the AIDS crisis. The rich As soon as they arrived at Saratoga Springs, diversity within the groups who attend the Terry noted, many people quickly came to retreats reflects the profound role the epihelp him unload the wheelchair and walker demic has played in shaping all of our lives. and then graciously led the older woman Despite his research into Honoring Our through the registration process. “That put Experience, Terry remained skeptical. me at ease immediately,” he told me.

“Steve had been on the retreat before Terry’s favorite among the many activities and very strongly urged me to attend the at the retreat was gathering in small groups to APRIL 2016 • A&U

discuss prompts like, “Describe how the virus has made you feel through time.” He enjoyed the intimacy generated in the small groups and the openness everyone brought to very emotional topics. He was also deeply moved when, at the end of the retreat, everyone was given a greeting card, with instructions to write a greeting to his or her younger self.

Terry said he wrote to his younger self, telling himself how wonderful the retreat would be,

and assuring himself that he would find and become part of a loving community in the future in San Francisco and Saratoga Springs.

“What I remember most,” Terry told me, “was the complete absence of judgment. No one was judging anyone or rejecting anyone.

It really made me feel like getting back out and getting involved with this community.”

Our interview concluded when Terry had to leave for a meeting at Honoring Our Experience. He is an enthusiastic member of the committee planning the next HOE retreat.

For more information about Honoring Our Experience, the quarterly Saratoga Springs retreats, and other HOE activities—or if you’re interested in a HOE retreat in your area—please contact Gregg Cassin at gcassin@shanti.org or call him at (415) 674-4706. You may also find more information at www.facebook.com/HONORINGOUREXPERIENCE. Hank Trout edited Drummer, Malebox, and Folsom magazines in the early 1980s. His published writing has ranged from gay “smut” (his term!) to literary criticism of William Blake. A long-term survivor of HIV/AIDS (diagnosed in 1989), he is a thirty-five-year resident of San Francisco, where he lives with his fiancé Rick. He read two of his pieces at the National Queer Arts Festival in San Francisco in June of last year.

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An Epidemic of Inequality HIV-positive youth meet with policy leaders to stare down the crisis in Atlanta

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n World AIDS Day in December twenty HIV-positive youth advisors met with more than 100 elected officials, community members, clergy and healthcare leaders to introduce their policy agenda for addressing barriers for HIV prevention among Atlanta youth.

It was the culmination of six months of educational sessions. And the work isn’t finished.

The youth advisors are part of the Youth HIV Policy Advisors program, founded by Equality Foundation of Georgia (the education, training and analysis arm of Georgia Equality) to inform legislators and other local policy influencers about the shockingly high HIV transmission rates among Atlanta’s youth, an epidemic within an epidemic that disproportionately affects youth of color.

Operating on a budget of $20,000, the program matches elected officials and clergy with HIV-positive youth advocates who become their personal advisors on the issue.

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Emily Brown, field organizer for Georgia Equality and the coordinator of the Youth HIV Policy Advisors Program, said the requirement for participating youth to be HIV positive was to break through the stigma of the virus.

“It’s important to center the voices and experiences of people living with HIV, and people need to see that normal life after a positive diagnosis is possible,” Brown told A&U. “If we want to talk about modern HIV advocacy we need people living with HIV to speak up and make sure the strategies we employ are authentic and functional for the people most affected.”

One youth advisor, D’Jona King, a twentyyear-old student in Atlanta, said the meeting with lawmakers and community leaders went better than she expected.

“There was no neg-

ativity, and all [of the participants] said they wanted to work with us to make our proposals a reality,” King tells A&U. The twenty youth advisors were assigned legislators and leaders to promote further discussion and action plans. Every agenda item proposed by the youth advisors, from modest to ambitious, will take a lot of heavy lifting and many allies beyond the twenty policy makers matched with advisors.

Atlanta is ranked fifth among U.S. cities when it comes to the rate of new diagnoses of HIV. Even more problematic is this statistic by hivcontinuum.org showing that HIV-positive Atlanta residents wait longer to get tested. There are more than fifty places to be tested in the Atlanta area, but by the time patients go there to be tested, nearly one-third have clinical AIDS among those who test positive.

To be young, positive and black Simply put, it is hard to be young, gay, and African American anywhere in the A&U • APRIL 2016

photos courtesy Georgia Equality

by Larry Buhl

U.S. Being all of these in the South carries some extra challenges.

HIV/AIDS is taking a huge toll on young black men who have sex with men (MSM) in metro Georgia, and the South generally, experts say. The reasons are varied, but experts say it’s not because they’re having more sex than others.

“People think of HIV has to do with behavior and that people get it if they have more sex or use IV drugs,” Brown says.

“But research is showing that the higher [HIV] rate African Americans is not because they are engaging in more risky behaviors, but rather because of structural factors like homelessness or poverty. It is not because they behaved differently.”

HIV, Brown says, is an epidemic of inequality, and inequality is great in the South.

For two years in a row the Brookings Institute, a Washington, D.C., think tank said Atlanta had the greatest income gap between the rich and the poor among the fifty largest cities in the U.S. Research has also shown homeless people, for a variety of reasons, are at greater risk for HIV. These grim statistics and their antecedents were the basis for a policy agenda created by youth in the advisors program.

In a series of sessions over the summer and fall, Brown and colleagues worked with youth to root out the main risk factors for contracting HIV and roadblocks to having a healthy life with HIV. These include the poverty-based anvils of housing insecurity and food insecurity, plus the lack of LGBTQ-inclusive sex education.

Some Atlanta-specific proposals include: • Create employment opportunities for groups at risk and living with HIV. • Increase shelter and emergency capacity for youth living with HIV. • Implement housing non-discrimination policies and train for LGBT cultural competence.

• Make PrEP free and accessible to teens and young adults.

• Make routine opt-out HIV testing available at pediatric and adolescent healthcare sites.

• Expand young peoples’ access to sexual health services.

• Support scientifically-accurate, age-appropriate HIV and sex education in schools.

At the state level, youth advisors are calling for new standards for sex education, repealing criminal punishments for people with HIV not disclosing their status (which discourages people from getting tested), and an expansion of Medicaid as part of the Affordable Care Act (ACA).

Georgia, like many states with Republican governors and legislatures, opted out of APRIL 2016 • A&U

the Medicare expansion provision of the ACA, or Obamacare. Taking those federal dollars would substantially reduce the costs associated with healthcare for the poorest Georgians, and would in theory get more people living with HIV to come out and seek services (and learn of their status) before the virus decimates their bodies.

One of the legislative participants, already an outspoken advocate of HIV prevention, is Georgia state Senator Vincent Fort (D-Atlanta), who told A&U that meetings with youth had opened his eyes to science and medical treatment advances, such as PrEP, as well as the criminalization of HIV. “I had already committed to introducing a ten-point program on HIV for the Black Caucus, but what I learned from the youth advisors helped me better draft that initiative,” Fort said.

Fort admitted to being surprised by some information presented by the youth, including the effectiveness of pre-exposure prophylaxis (PrEP), and the difficulty in accessing it.

He also was disturbed by criminal laws targeting HIV-positive people. Much of what he learned from the youth advisors, he says, will be used in crafting a ten-point program for his caucus to consider— not yet formal legislation, but priorities for reducing HIV among youth in Atlanta.

There is no guarantee that any of the youth advisors’ proposals will make it to law. But even LGBT-friendly legislators admitted to having blinders on about HIV and were shocked at the number of challenges youth of color face. And they see how those challenges increase the risk of contracting HIV and of having worse health outcomes with an HIV diagnosis.

“We know a large chunk of people with HIV in Georgia do not have access to health care and are not virally suppressed,” Brown says. “People not engaged in care are more likely to transmit the virus to others. It’s a numbers game.”

“HIV has no agenda,” Brown adds. “We create the environment for it to survive.”

Larry Buhl writes the monthly Hep Talk column for A&U.

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Empowerment Is Treatment

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ndetectable is a worthy goal, no doubt about it. A suppressed viral load very often means the individual living with HIV is adherent to medications that are working for his or her particular body. It very often means that HIV-specialized primary care and other health professionals have been successful in engaging patients along every step of the continuum of care.

Many individuals living with HIV in developed nations like the United States have reached, or will likely reach, an undetectable status. A 2011 CDC reports that thirty percent of individuals have achieved viral suppression. Of the seventy percent who are not virally suppressed, sixty-six percent have been diagnosed but are not in care.

So, of course, there’s still work to be done to encourage people to engage in regular testing and know their status, and to retain them in care so that access to antiretrovirals is consistent and pervasive.

But while undetectable as a goal may indicate a lot about surviving, it indicates little about thriving. That is, undetectable means little if you are suffering from the effects of trauma, past or present, or anxiously trying to navigate personal relationships or community spaces impacted by violence.

Your doctor may be pleased to see your viral load decrease and decrease and CD4 counts jump, and you may be pleased, too, but you may also be worried about an abusive partner or using substances as a way to tamp down painful memories or soothe the barbs of isolation because no one in your life knows that you are living with HIV. The goal of virologic control or increased CD4 cell counts may not be enough to motivate you to stay adherent or seek mental health support, even as you seek to nurture your dreams and make other positive changes in your life.

Some people are dying from HIV and its negative health effects, yes. But, as the Women’s HIV Program (WHP) at the University of California, San Francisco, and others have discovered, many more who are positive are dying from the past or present impacts of trauma and post-traumatic stress disorder (PTSD), and/or violence. And women are particularly affected as communities and relationships continue to be structured by gender inequity and sexism, racism, and poverty. WHP has suggested we need to

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edward machtinger, md, & the women’s hiv program champion trauma-informed primary care look at HIV holistically; we need to shift the virologic control paradigm.

“People are not dying from HIV,” says Edward Machtinger, MD, director of the Women’s HIV Program and a Professor of Medicine, “[as much as] they’re dying from violence and hopelessness. End period.”

There is hope, however. These deaths, reminds Dr. Machtinger, are preventable deaths.

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Detecting trauma as a barrier to health he Women’s HIV Program has taken up the charge of empowering women to overcome trauma.

Established in 1993 as one of the first programs in the nation specifically designed for women and girls living with HIV, WHP is now committed to identifying and understanding the relationship between trauma and HIV, to finding ways to support patients in a trauma-informed primary care setting, and to sharing their innovative ideas with researchers, policymakers, and, of course, other clinicians. But WHP did not always understand the full impact of trauma and violence on health outcomes. Over the past ten years, WHP’s clinical and research team, led by Dr. Machtinger and Carol Dawson Rose, RN, PhD, came to learn how their set goals fell short as a comprehensive response to patients in their care.

When a patient dies at the Women’s HIV Program, the care team convenes to study what happened in an effort to improve its services and improve the health outcomes for its other patients. WHP has been conducting these reviews for over a decade and patterns have emerged.

“What leapt out at us were both the fact that almost no one was dying from HIV and instead the majority were dying either directly or indirectly from trauma,” says Dr. Machtinger. “Of all of the deaths, over the past two decades, three of the nineteen deaths—sixteen percent—were related to HIV. Eighty-four percent of the deaths in our clinic had nothing to do with HIV, and were primarily related to trauma. Directly, through murders, and indirectly, through substance addiction, substance-related diseases, overdose, depression, and suicide.”

Dr. Machtinger and the team at WHP found the high number even more striking—and distressing—for the fact that they

knew that everything was in place to provide a gold-standard level of HIV care. As a fully realized Ryan White multidisciplinary care program, WHP offers to its patients a team of doctors, nurses, pharmacists, social workers, case managers, therapists, psychiatrists, and an obstetrician, all of whom are committed to a body-mind-spirit approach. WHP works with community-based and national partners, like The Well Project and Positive Women’s Network–USA, to complement its services. It even offers breakfast.

But WHP team members became acutely aware that they could do better. “We take exceptionally good care of our patients. Over eighty-five percent of our patients are on antiretroviral medicines, and over eighty-five percent of those [patients] are undetectable on their antiretroviral medicines. And because of that we receive all of these commendations, and people assume, and for a long time we were assuming, that we were doing an awesome job taking care of our patients.”

However they were also trying to make sense of how they were falling short. Notes Dr. Machtinger, over fifty percent of patients in clinic suffer from depression and almost forty percent report using hard substances.

Many experience intimate partner violence.

Many suffer from a lack of personal support because they are not out about their positive status. Not very many patients are employed despite the fact that many patients describe working as one of their long-term goals.

Not very many were realizing any of their long-term goals. Combined with the deaths, these health and wellbeing shortfalls began to sound alarms.

Increasingly, Dr. Machtinger and the WHP team realized that “the bar was set far too low in Ryan White primary care clinics across the country.”

He explains: “Our clinics are held accountable to make sure that people have an undetectable viral load for their own health and to not transmit the virus. But in truth we’re not addressing the primary reasons people are dying, which is from preventable illnesses, mostly related to trauma. And that experience in clinic—that mismatch between having this robust, really famous clinic and then looking at the patients and realizing that their actual health outcomes beyond their viral load were actually poor—made me hunger for a deeper connection, a deeper way to help people heal.”

A&U • APRIL 2016

teen years-old, when she was diagnosed with HIV when she presented alone to the emergency room with pelvic inflammatory disease, a sexually transmitted disease, and was diagnosed with HIV then.

“She had had a life filled with trauma.

She had a mom who was a crack addict, who also had HIV and died when she was a kid. I think she spent most of her childhood in the criminal justice system and in foster care.

“When it came to taking care of herself she just could not take her antiretroviral medications, despite massive efforts on so many staff members’ parts. She had a baby one year before she died; she was so excited about her baby. But she fundamentally did not believe that the effort necessary to take her antiretrovirals would make her life better, because for so many years, ever since she was a tiny child, people told her that this next [step] would lead to something better and it actually led to stuff that was far worse. And she was just profoundly without hope.”

In response to its discoveries about the impact of trauma on women living with HIV, the team at WHP began to study the problem and its possible solutions more closely, through more formal analysis, and, in turn, developed partnerships with organizations and advocates on the community and national levels.

One study, titled “Psychological Trauma and PTSD in HIV-Positive Women: A Meta-Analysis” by Machtinger et al., and published in AIDS and Behavior in 2006, collated all known statistics from previous studies of rates of different types of trauma in women living with HIV to calculate the most accurate rates of trauma and PSTD experienced by women living with HIV. The study included participants who met estab-

Edward Machtinger, MD, director of the Women’s HIV Program, shares a moment with client Cassandra Steptoe and social worker Esther Chavez.

photos by Genevieve Shiffrar

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Defining the scope of trauma HP conducted a formal analysis involving a majority of its patients, focusing on contemporaneous trauma-related conditions associated with having a detectable viral load.

“Patients who had experienced trauma in the past thirty days were four times more likely to be experiencing virologic failure, having their medications not work, than people [living with HIV] who didn’t experience trauma in the past thirty days,” notes Dr. Machtinger. The numerical data provoked his most concrete epiphany, he says, noting that, at the time, he was still somewhat focused on virologic control as the primary measure of health. “I realized that trauma not only affects all these other aspects of people’s lives, but trauma affects why people fail their antiretrovirals.”

He continues: “Trauma definitely has permanent, physiological impacts on the body. But my belief is that the reason [for] the relationship between trauma and virologic failure is primarily if not exclusively through medication non-adherence.”

Dr. Machtinger points to the three women who have died specifically from HIV over the past decade while engaged in care at WHP. “[They] actually died from medication non-adherence. And they really, really died from hopelessness.”

He shares one woman’s story. “One of them was a twenty-two year-old woman whom I have known since she was fifAPRIL 2016 • A&U

lished DSM-IV diagnostic criteria for PTSD trauma, that is, “exposure to an extreme traumatic stressor that is associated with intense fear, helplessness, or horror (e.g., actual or threatened death or serious harm to one’s physical integrity or witnessing an event that involves death, injury, or a threat to the physical integrity of another person),” as well as those who had PTSD but whose traumatic event was not recorded.

“The rates that we calculated were really quite shocking, even compared to the already high rates in the general population,” notes Dr. Machtinger.

The summarized findings include: • Fifty-five percent of women living with HIV have experienced intimate partner violence, compared to approximately twenty-three percent in the general population.

• Over sixty percent of women living with HIV have experienced sexual abuse, almost five times the rate of the general population.

• Thirty percent of women living with HIV have current PSTD—six times the rate in the general population.

One other finding from WHP’s earlier trauma-related study and data from other studies are pertinent here: • Trauma is associated with four times the rate of medication failure and almost twice the rate of death among HIV-positive women These findings, along with their clinical experience, provided the team members with a sharper definition of the severe and differing impacts of trauma on the women in its program. When they conducted the meta-analysis and reviewed studies performed by other colleagues, “we saw that trauma leads to failure at each step of the

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HIV care continuum,” notes Dr. Machtinger.

“And trauma leads to morbidity and mortality, even more importantly off of the care continuum, [related to events] we wouldn’t [normally take note of in the virologic control paradigm] like hospitalizations, and illnesses and deaths.”

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Preventing trauma-related deaths oon after the studies came out, Dr. Machtinger was invited by Naina Khanna, executive director of Positive Women’s Network– USA, to speak at a press conference at AIDS 2012 in D.C. Khanna had seen the “devastating impact” of trauma on women in her organization and wanted a researcher to be present to provide scientific evidence alongside her experiential data.

Meeting and working with Khanna was one of the most moving and career-changing experiences of his life, Dr. Machtinger shares, because he came to understand more vividly the value of advocacy and policy in women’s health.

WHP and PWN-USA became formal institutional partners and have worked together since. Both became unified in their commitment to developing a scalable model of trauma-informed primary care, championing it as potentially the next major innovation in Ryan White care delivery. To that end, the partners convened a meeting in D.C. in August 2013, bringing together twenty-seven trauma researchers, academics, advocates, policymakers, and governmental officials for two days to begin the process of identifying a model to help women heal from past trauma and prevent further abuse.

Subsequently, they published a paper to guide program directors. And the partners have been lending their expertise to forums on the federal level. They continue to advocate with the Office of National AIDS Policy, the Health Resources Services Administration, and other governmental entities and working groups responsible for the design and implementation of Ryan White care.

“Ryan White is an amazing beacon...it taught primary care clinics that they can’t do this alone. [It taught] that primary care has to include robust social services and that primary care clinics need to partner with other agencies inside and outside of medicine to be able to [substantially] affect the health and lives of people in their care, says Dr. Machtinger. But the time has come to revise the virologic control paradigm. “We need to change the expectation of Ryan White primary care clinics [and set new goals] to eliminate preventable deaths among people living with HIV—and preventable deaths include people who die of hopelessness that

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stop them from taking their medicines that really aren’t being addressed effectively in Ryan White primary care.”

These new goals, as Dr. Machtinger and others suggest, include helping patients heal from trauma along every step of the continuum of care, starting with screening and referrals for recent and past trauma as a core component of HIV treatment. “In this way, Ryan White Clinics can build on the amazing successes we have had treating HIV and more effectively deal with the actual causes of illness and death among women living with HIV, which are almost all related to mental health, substance use, and violence,” says Dr. Machtinger.

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Trauma-informed care as primary care ow do we make healing from trauma a reality? It starts with creating a culture of trauma-informed healthcare.

Expanding the job description.

Clinicians must first understand that trauma care is part of healthcare. “Many people in primary care don’t think that childhood abuse or intimate partner violence or structural violence like racism or homophobia or transphobia or community violence, like police violence, is in their domain, something they can address and should address in the context of primary care,” says Dr. Machtinger. “They also don’t believe that it’s possible to address it. They have not been taught in medical school that somebody who has experienced child abuse and is experiencing PSTD that that person can heal; and they’re not taught and resourced with ways to help them heal. [However] we as physicians should be held accountable to effectively treat depression, PTSD symptoms, violence (intimate partner violence or random violence), and substance use.”

Primary care sites need partners. To help women heal from trauma, specific evidence-based interventions have been shown to work, starting with screening and ultimately to trauma-specific treatments, such as trauma therapy and peer-empowerment leadership and support groups. In order for trauma-informed primary care to work, however, clinicians and other staff need to partner with other organizations in the community that are expert in this area and also be educated about what a healing response to trauma entails, suggests Dr. Machtinger.

Trauma-informed services focused on body, mind, and spirit help improve the mental health of patients as well as help patients who are substance abusers begin the journey toward recovery. Notes Dr. Machtinger, substance use and mental health interventions are typically “woefully inadequate.” For example, substance use in-

terventions may work for the time a patient is at a residential treatment center but often that patient relapses after he or she leaves.

One of the main reasons for these relapses is that trauma and PTSD are not being treated alongside mental health conditions or addiction. “The need to treat trauma alongside depression and substance use for these treatments to be effective has been demonstrated conclusively by research. Yet this is rarely done,” says Dr. Machtinger.

Self-care starts at home. It is important that primary care doctors and staff learn how to heal themselves. “Partnerships are so key in trauma-informed primary care because primary care clinics are typically overwhelmed, primary care physicians themselves are overwhelmed for many reasons because of the pressure put on them by their institutions but also because of the nature of who they’re caring for,” says Dr. Machtinger. “Many of the primary care physicians themselves have had trauma or they would not have chosen this field. Many of us are HIV-positive; many of us have severe trauma histories; and we work with patients who come in and are sharing with us very traumatic events, and that triggers clinicians and they experience a lot of vicarious trauma. And primary care clinics are not resourced to help clinicians care for themselves, to understand the impact of trauma on themselves.”

Creating a healing environment. An important part of creating a trauma-informed culture is promoting peace in clinic. “The design of clinics often reflect the trauma of the patients. Oftentimes clinics are really chaotic.

People in clinics are really reactive; they’re really loud. People are really offensive sometimes; the front desk staff can be really barky.

People are really rushed,” says Dr. Machtinger. “What patients with trauma need, and what providers with trauma need to care for them, is a calm clinic, one where they’re supported, where they’re not being asked to do impossible amounts of work in very short periods of time, where their own psychological stresses are being acknowledged and dealt with. And that’s not an impossible task. We’re starting to do it in our clinic, by educating our providers about the link between trauma and health in their patients and in themselves, and giving them tools, the skills to communicate with each other and their patients in a more compassionate and understanding way.” A compassionate and calm response will improve staff and patient relationships, as well as relationships between providers, attests Dr. Machtinger.

Primary care can’t opt out. Even though the issue of trauma is systemic, pervading institutions like family, community, school, police, and so on, the health infrastructure A&U • APRIL 2016

needs to embrace the idea that the problems introduced by childhood sexual abuse, intimate partner violence, community violence, and structural violence, like racism and homophobia, are solvable. Healthcare providers need not opt out, as most have done so far, and should opt in. The relationship between trauma and disease is too important, argues Dr. Machtinger.

“The health system is massive, billions and billions of dollars and millions of people. It’s these huge buildings and all of these drug companies. This massive, powerful network of people and institutions, all supposedly trying to help people get healthy. [But] then it’s largely been ignoring a primary if not the primary reason people are sick,” says Dr. Machtinger. “I think we need to break out of our offices and our addiction to prescribing medicines and look at other ways to help people heal. Addressing people’s problems through partnerships with community organizations and through innovative interventions in clinics I think is the best step that I know of towards a more healing system.”

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Healing is possible rauma has all of these devastating outcomes. Most people with HIV ended up getting infected with HIV in the setting of some trauma. Not everybody, but many people.

And once people are living with HIV, trauma is negatively affecting their health outcomes,” says Dr. Machtinger. “I get to a place when I talk to people and they say fine, what can I do about it?”

To answer this question, Dr. Machtinger along with the WHP team and their partners have conceptualized the response to lifelong trauma in three different ways.

“Firstly, trauma interrupts connections between people and healing from trauma requires repairing those connections through trauma-specific therapies, including cognitive behavioral therapy and sometimes reexperiencing therapy. And it requires healing those connections through creating support and community through organizations like The Medea Project and Positive Women’s Network–USA, where people can come out about their HIV status to people they trust, make friends, share their actual lives, and get the support they need.

“Secondly, trauma interrupts physiological connections in the brain, creates anxiety, and makes people triggered by events that are occuring now because of events that occurred in their past. Healing from trauma requires a physiological approach through the use of medications or the use of APRIL 2016 • A&U

physiological techniques like EMDR [eye-movement desensitization and reprocessing].

“Thirdly trauma affects one’s connection with one’s own body.

Many people who have experienced trauma have very problematic relationships with their body. A healing response to trauma requires some form of mindfulness-based stress reduction, movement therapy, or yoga. People will choose whatever they relate to first, such as theatrical expressive therapy, or supportive therapy through peers, or individual therapy, or people might not want any of that and want to go to our mindfulness-based stress reduction group. Actually healing from PTSD and severe trauma will likely require a combination of one, two, or three of those categories of interventions.”

One intervention, whose positive effects the WHP team members have seen and studied firsthand, is an expressive therapy program for women called The Medea Project: Theater for Incarcerated Women, started almost twenty-five years ago

by Rhodessa Jones. Eight years ago, WHP partnered with the Medea Project to create HIV-specific workshops. The Medea Project: HIV Circle has since toured the U.S. in an effort to share these stories and help destigmatize the disease; a documentary titled Talk Back Live has captured their explorations of what it means to live with HIV in the twenty-first century, as the website expresses it.

“When I first proposed participating in the Medea Project to a number of people I was just flabbergasted that they agreed because most of the women were not out about their HIV status. Actually none of the women were fully out about their HIV status before they participated in the Medea Project. I participated in many of the workshops of the Medea Project. I watched women as they first met one another, started writing about their experiences, reading their experiences to each other, choreographing their experiences with Rhodessa Jones...into this theatrical presentation. And then performing this in their initial theater run to over 1,000 people,” says Dr. Machtinger, who was inspired watching the healing happen right before his eyes.

Through experiences like The Medea Project, women find that they are strong, and confident enough to disclose their status to others, make friends, find support, notes Dr. Machtinger. “If you are not out to anybody, it can be very dark and isolating. It’s really,

really hard to share your life if you don’t feel safe enough to be out about your status and form real relationships. That secret is such a huge burden.”

He continues: “What we realized in the Medea Project is when the women were writing stories and then sharing their stories with others, the first stories that they wrote about and were willing to talk about were their HIV status, their history of HIV, their feelings about HIV, and the stigma of being HIV-positive. [However] it took many, many months and for some people many years to write stories about their trauma and their childhood sexual abuse and their victimization by their partners.”

Neither disclosing one’s HIV status nor unpacking one’s history of trauma is easy work. Reflecting on childhood sexual abuse, for example, can very often be clouded by immense shame. But the catharsis of moving past the secret of both is the same, says Dr. Machtinger. Healing is possible for both.

The WHP team conducted a formal study of the impact of The Medea Project.

“An Expressive Therapy Group Disclosure Intervention for Women Living With HIV Improves Social Support, Self-efficacy, and the Safety and Quality of Relationships: A Qualitative Analysis,” coauthored by Machtinger, Carol Dawson Rose, Rhodessa Jones and others, and published in the Journal of the Association of Nurses in AIDS continued on page 62

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CROI Briefs four research studies you need to know about

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nother year of the Conference on Retroviruses and Opportunistic Infections (CROI 2016) has come to pass. Here are a few less publicized but important highlights on HIV remission and eradication from this year’s conference.

A Second Berlin Patient?

Several attempts have been made in HIV-positive cancer patients to reproduce the possible eradication of HIV seen in Timothy Ray Brown. There have been past reports of procedures that appeared promising, but eventually viral rebound occurred or the patient succumbed to cancer.

During CROI, researchers in Germany reported the case of a forty-one-yearold man in Düsseldorf who continues to show signs, after 900 days, that HIV may have been eradicated from his body.

HIV-positive since November 2010, the unidentified man was diagnosed with acute myeloid leukemia. Doctors attempted to cure him of both his cancer and HIV with the allogenic (involving cells that are genetically dissimilar and hence immunologically incompatible) transplantation of cells from an individual who possessed the CCR5 delta-32 deletion.

To date no HIV proviral DNA has been found in peripheral blood mononuclear cells, bone marrow, or rectal tissue.

HIV-specific antibody responses measured by Western blot are waning.

Even in Timothy’s case, eight years later, there still remains an uncertainty as to whether HIV has been completely eradicated from his body. It certainly is too early to label this case an eradication cure and, as the man is still on ARVs, we can’t call this a functional cure. However, the Düsseldorf man appears to be the most promising case to date similar to Timothy Ray Brown.

Post-Treatment Control Results were presented on a subset of participants from the SPARTAC study who experienced post-treatment control after discontinuing ARVs. The SPARTAC study aimed to identify biomarkers that

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would indicate post treatment control.

Continued follow-up of 3.5 years identified five African participants who continue to maintain viral loads below 400 copies after discontinuation of ARVs. However, two of the five had undetectable viral loads prior to beginning ARVs, which may indicate that they were elite or viremic controllers.

Previous data from the study found three pre-therapy measurements of T-cell exhaustion biomarkers (PD-1, Tim-3 and Lag-3) that were associated with time to viral rebound. However, they did not appear to be significant in the remaining three Africans though it’s difficult to be sure due to the small sample size.

Use of ATI in Curative Studies An abstract entitled “Relationship among viral load outcomes in HIV treatment interruption trials” examined the relation between the time to viral load rebound and analytic treatment interruption (ATI) viral set points.

ATI is thought to be the most conclusive means of studying potential cure strategies in clinical trials. A review was conducted in 235 study participants engaged in six AIDS Clinical Trials Groups (ACTG) studies to gain a better understanding of the relationship between viral rebound (VL) and ATI viral set points.

Researchers found: • Overall, viral rebound and ATI viral set points were associated with time to viral rebound.

• There was no significant association between rebound timing and ATI VL set point for those who rebounded in less than twelve weeks.

• VL set points were lower in participants with rebound over twelve weeks and participants treated during early infection.

• Pre-ART VL correlated with set point, though sixty-eight percent of participants had a set point lower than pre-ART VL. According to researchers, “[t]hese results illustrate complex relationships between post-ATI virologic outcomes and the potential presence of biological

factors mediating rebound timing and set point.”

Immunotherapy to Block PD-1 Researchers led by Rama Rao Amara at The Yerks National Primate Research Center and Emory University developed an antibody intended to block the PD-1 molecule in monkey’s infected with SIV. The anti-PD-1 antibody was studied in conjunction with ARVs to determine if it could flush HIV out of viral reservoirs.

PD-1 is a molecule that inhibits immune response during chronic HIV infection. Antibodies that block PD-1 have been shown to restore T-cell function.

A cohort of monkeys was treated with the anti-PD-1 antibody for fourteen days.

After the first ten days of treatment, ARVs were added. This cohort exhibited quicker viral suppression than the control group, with an average time to viral suppression of forty-two days verses 140 days in the control group. More active antiviral T cells were seen in the antibody cohort.

Monkeys in a separate cohort who received the antibody in three infusions, with a month between each infusion, experienced very low levels of SIV. Viral rebounds were reported as short-lived.

The researchers concluded: “These results reveal for the first time the potential of PD-1 blockade, both on restoring anti-viral CD8 T cell function, and possibly destabilizing the viral reservoir under ART. They highlight the potential of PD-1 blockade to work synergistically with other therapeutic agents such as vaccines and latency reversing agents to effectively diminish HIV reservoir under ART as a means to establish a functional cure.”

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

A&U • APRIL 2016

E R U CULT S THE

AID OF

BOOKS

Living a Healthy Life with HIV

by Allison R. Webel, RN, PhD, Lorig, et al.

Bull Publishing Company

C

all me “jaded.” Having read a plethora of self-help books, I tend to approach them now with great skepticism and low expectations.

Most self-help books I’ve read were, regretfully, quite useless—mired down in insular New-Age-y lingo and painfully meaningless psycho-babble.

Not so the new fourth edition of Living a Healthy Life with HIV, a truly valuable reference book written in plain, readily accessible language and containing genuinely useable techniques. The writers—a team of physicians and researchers at Stanford University and elsewhere—have compiled very practical and practicable tips, ideas, and resources for successfully managing HIV as a chronic disease, culled from their own research, the current care guidelines promulgated by the CDC, and the experiences of women and men who have actually used these techniques to self-manage their own HIV. The writers recommend reading the first two chapters of the book (an overview of “self-managing” HIV and forming an action plan) and then referring to subsequent chapters for specific advice and strategies. Thus, I read the first two chapters and then turned to the sections on issues I face: fatigue, aging with HIV, and sleep problems. In each section, the suggestions are concrete, easily understood, and actually do-able. The book also addresses managing medications and their side-effects, eating healthily, exercising, making treatment decisions, and talking with family and friends about your diagnosis.

Usually, when I’ve finished reading a self-help book, I’ve passed it along to

60

others or donated it to the library, knowing that I would never use it again.

Not Living a Healthy Life with HIV—this one gets a permanent place of prominence on my bookshelf. If you are living with HIV, it should be on yours also.

—Hank Trout

FILM

We’re Still Here Directed by Grissel Granados & John Thompson Lucha Productions

P

erhaps, someone once said, we need to follow our pain and heartbreak, not our bliss. And that is precisely what the people we meet in the film We’re Still Here do. Each of them belongs to the first generation of kids born with HIV in the 198os and 1990s; and each has survived despite the odds.

The filmmaker, Grissel Granados, knows her territory only too well: She herself has perinatally acquired HIV and has been telling her own story since she was twelve. She is adept at getting her subjects to tell their stories: In true Charles Kuralt style, she listens more than she talks, nudging the interview gently along only when she has to.

And their stories are powerful ones.

Mary Bowman, the black poet, learned that she was HIV-positive during a routine doctor’s visit in fourth grade.

The next day, they were discussing Ryan White, and Bowman suddenly piped up with “I’m HIV-positive, and I take medication every day.” The other kids began teasing her, and “that really started the internal stigma I had, not even dealing with the outside stigma.

So that was a challenge in and of itself.”

Nestor, a musician, learned when he was thirteen. Alison Hathaway doesn’t remember how old she was, only that the other kids wouldn’t play with her and her brother, who was also

infected. “Growing up, we never talked about it,” she muses. “That’s what we called it—‘it.’”

But artist Kia Labeija [A&U, May 2015] had learned to speak out from her mother, AIDS activist Kwan Bennett: She stood up in a school assembly back in seventh grade and told everyone that she had HIV. They have suffered in ways that some of us can’t imagine children suffering. But they’ve also grown into wounded healers, souls full of compassion.

Bowman works at The Women’s Collective, a group run by and for women living with HIV. Labeija has taken her pain and sorrow over her mother’s death and turned it into “24,” a series of photographic self-portraits that was selected to be part of the Art AIDS America exhibit. She views it as her way of beginning to heal herself and others. That story, like all the others, is another facet of the prism, bringing its own poignant yet ultimately hopeful light to bear on the subject.

—T.J. Banks Hank Trout edited Drummer, Malebox, and Folsom magazines in the early 1980s. His published writing has ranged from gay “smut” (his term!) to literary criticism of William Blake. A long-term survivor of HIV/ AIDS (diagnosed in 1989), he is a thirty-fiveyear resident of San Francisco, where he lives with his fiancé Rick. He read two of his pieces at the National Queer Arts Festival in San Francisco in June of last year.

T. J. Banks is the author of Sketch People, A Time for Shadows, Catsong, Houdini, and other books. Catsong was the winner of the 2007 Merial Human-Animal Bond Award.

A&U • APRIL 2016

A Calendar of Events

Treatment Horizons continued from page 57

S.T.A.G.E. (Southland Theatre Artists Goodwill Event), billed as the world’s longest-running musical theater AIDS benefit, is celebrating Stephen Sondheim to help raise funds for AIDS Project Los Angeles. The cast has yet to be set for “Sondheim No. 5,” but the caliber of performers is always top-notch; last year, the performers and presenters included Robert Morse, Carole Cook, Sally Kellerman, Florence Henderson, Craig Ramsay, Lea Thompson, Adam Wylie, and Greg Louganis [A&U, February 2008]. David Galligan [A&U, December 1999], one of the event’s original creative forces, will again direct. A silent auction will offer a plethora of exciting vacation packages and delightful dinners.

All of the proceeds benefit Care, outlines five ways that the women were impacted in a positive, transformative way.

The five impact categories include: Sisterhood. The formation of deep, honest, and supportive relationships among group members Catharsis. Freedom from the burden of secrecy about HIV, childhood and adult traumas, and other stigmatizing experiences Self-acceptance. Reframing the understanding of what it means to be an HIV-positive woman, normalizing life with HIV and embracing a stronger and more positive self-identity Safer and healthier relationships.

Developing safe, honest, authentic, and fulfilling relationships Gaining a voice. Gaining a sense of purpose and accomplishment as an educator and activist and the desire and confidence to change the social norms that create stigma, isolation and trauma.

R

“I saw Debra driving a car.” ecently, Dr. Machtinger was talking to a patient about possibly joining in The Medea Project or one of the other interventions.

“She surprised me by saying yes.

And this is the first time that I really felt that I was having a real conversation with her. I asked what had changed and she said, ‘I saw Debra driving a car.’

“I knew exactly what that meant because

62

APLA’s vital, culturally competent services, including testing and treatment education, case management, housing support, food assistance, dental services, behavioral health care, and benefits counseling, among others.

Recently, APLAHW (APLA Health & Wellness) launched a public education campaign about PrEP called #ItFeelsGood to raise awareness about the new HIV prevention option. Visit apla.org for more information.

Date: June 18; time: shows at 2 p.m. and 8 p.m.; location: Wallis Annenberg Center for the Performing Arts, Goldsmith Theatre, 9390 N. Santa Monica Blvd. Beverly Hills, California; tickets: in the $75–$225 range.

For more information on this year’s cast and to purchase tickets, log on to: www.stagela.com.

Debra used to be addicted to crack, homeless, and well known in the San Francisco community as somebody who was lost, permanently. Debra joined the Medea Project and is now one of its leading people, and is so much healthier. She’s completely off of crack cocaine, she’s housed, she dresses beautifully, her health is perfect, and she has a car now.

And when this patient saw Debra looking beautiful, driving through San Francisco in her car, that to her was something very meaningful. To her that meant it was possible for somebody like Debra, like herself, to get that much better. And I think that she didn’t think that was possible. I don’t think Debra believed it was possible before she went through that transformation. And I don’t think most doctors believed that was possible. [Not believing in the possibility] gets in the way of people trying to be bold and to help people in a deeper way than we do now....”

Empowerment is treatment—it’s the key to improved health and wellness. The first step, notes Dr. Machtinger, is for someone living with HIV to realize that HIV should not be a source of shame. Women should understand “[t]hat getting HIV was not a crime.

It was not because you were a bad person. It’s not your fault. There’s so much stigma and so much blame about just having HIV. [They should understand] that being depressed or using substances is not because you’re a deficient person but is a coping strategy that works but is ultimately problematic. It’s

about forgiving yourself, and understanding that a lot has happened that has not been in your control. And that you can really reclaim that control, reclaim that sense of self and sense of power and have a voice and have a different perspective on being HIV-positive and on having been a trauma survivor. Your role in the community can be somebody who could actually help change the reality for other people who either don’t yet have HIV or are living with HIV.” Currently, the Women’s HIV Program is working on transforming its clinic into a demonstration site of trauma-informed primary care. It was one of six sites around the country to be funded by the Robert Wood Johnson Foundation, and WHP was the only one specific to HIV care.

“What we’re working on now is creating all the different interventions and studying them while at the same time trying to make sure that what we’re creating is scalable to other Ryan White primary care programs throughout the country,” notes Dr. Machtinger in closing. “What was missing from our last paper were the details of how you go about, step-by-step, transforming your program into one that effectively responds to people’s trauma instead of primarily focusing on getting their viral load to undetectable.”

For more information, log on to: http://whp.ucsf.edu.

Chael Needle is Managing Editor of A&U. A&U • APRIL 2016

APRIL 2016 • A&U

63

Survival Guide

[a portrait by sean black]

Robert Gomer “In the words of the late Dr. Wayne Dyer ‘We are spiritual beings having a human experience.’ Not the other way around. For me this means self-acceptance and the awareness that I have been blessed with an interesting and abundant life. I acknowledge the path of serenity. If not for the love, support, and compassion of my family, friends, and community, I would not have survived. In seeking to live a genuine and open life, I consciously make choices that expose me to a world of experience and lead me to be of service and to share freely that which has been given to me.”

Hailing from a small Ohio farm town, Robert Gomer left for San Francisco with his newly minted Ohio State degree in search of his life adventure. Challenges of substance abuse led him to 12-step recovery after being diagnosed with HIV in 1982. Some “wake up and smell the coffee!” moments provided the impetus and foundation for living a healthier lifestyle. Fortunate to have had access to doctors and lifesaving meds, he made his health a priority, as well as civic and community responsibilities (he still currently serves on numerous nonprofit boards). Landing in Palm Springs in 1977, he now resides in nearby Cathedral City with his partner, Kevin Rohden, where he runs the interior plantscaping business, servicing both residential and commercial clients in the various desert cities of the Coachella Valley, that he founded in 1993.

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

A&U • APRIL 2016

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