JULY 2015 • ISSUE 249 • AMERICA’S AIDS MAGAZINE
ON HOW HE BECAME AN HIV ADVOCATE & WHY HE WILL NEVER STOP
PrEP Up Alabama ADVOCATE WADE DAVIS HELPS KICK-OFF A NEW PREVENTION CAMPAIGN
ASOs ACROSS THE NATION STEP UP ACCESS TO PREVENTION TOOLS
plus • Joe Garland • #PrEPHeroes • Karen Anzoategui
What is STRIBILD? STRIBILD is a prescription medicine used to treat HIV-1 in adults who have never taken HIV-1 medicines before. STRIBILD can also replace current HIV-1 medicines for some adults who have an undetectable viral load (less than 50 copies/mL of virus in their blood) and whose healthcare provider determines that they meet certain other requirements. STRIBILD combines 4 medicines into 1 pill to be taken once a day with food. STRIBILD is a complete single tablet regimen and should not be used with other HIV-1 medicines. STRIBILD does not cure HIV-1 infection or AIDS. To control HIV-1 infection and decrease HIV-related illnesses you must keep taking STRIBILD. Ask your healthcare provider if you have questions about how to reduce the risk of passing HIV-1 to others. Always practice safer sex and use condoms to lower the chance of sexual contact with body ﬂuids. Never reuse or share needles or other items that have body ﬂuids on them.
IMPORTANT SAFETY INFORMATION What is the most important information I should know about STRIBILD? STRIBILD can cause serious side effects: • Build-up of an acid in your blood (lactic acidosis), which is a serious medical emergency. Symptoms of lactic acidosis include feeling very weak or tired, unusual (not normal) muscle pain, trouble breathing, stomach pain with nausea or vomiting, feeling cold especially in your arms and legs, feeling dizzy or lightheaded, and/or a fast or irregular heartbeat. • Serious liver problems. The liver may become large (hepatomegaly) and fatty (steatosis). Symptoms of liver problems include your skin or the white part of your eyes turns yellow (jaundice), dark “tea-colored” urine, light-colored bowel movements (stools), loss of appetite for several days or longer, nausea, and/or stomach pain.
• You may be more likely to get lactic acidosis or serious liver problems if you are female, very overweight (obese), or have been taking STRIBILD for a long time. In some cases, these serious conditions have led to death. Call your healthcare provider right away if you have any symptoms of these conditions. • Worsening of hepatitis B (HBV) infection. If you also have HBV and stop taking STRIBILD, your hepatitis may suddenly get worse. Do not stop taking STRIBILD without ﬁrst talking to your healthcare provider, as they will need to monitor your health. STRIBILD is not approved for the treatment of HBV.
Who should not take STRIBILD? Do not take STRIBILD if you: • Take a medicine that contains: alfuzosin, dihydroergotamine, ergotamine, methylergonovine, cisapride, lovastatin, simvastatin, pimozide, sildenaﬁl when used for lung problems (Revatio®), triazolam, oral midazolam, rifampin or the herbal supplement St. John’s wort. • For a list of brand names for these medicines, please see the Brief Summary on the following pages. • Take any other medicines to treat HIV-1 infection, or the medicine adefovir (Hepsera®).
What are the other possible side effects of STRIBILD? Serious side effects of STRIBILD may also include: • New or worse kidney problems, including kidney failure. Your healthcare provider should do regular blood and urine tests to check your kidneys before and during treatment with STRIBILD. If you develop kidney problems, your healthcare provider may tell you to stop taking STRIBILD. • Bone problems, including bone pain or bones getting soft or thin, which may lead to fractures. Your healthcare provider may do tests to check your bones. • Changes in body fat can happen in people taking HIV-1 medicines. • Changes in your immune system. Your immune system may get stronger and begin to ﬁght infections.
Tell your healthcare provider if you have any new symptoms after you start taking STRIBILD. The most common side effects of STRIBILD include nausea and diarrhea. Tell your healthcare provider if you have any side effects that bother you or don’t go away.
What should I tell my healthcare provider before taking STRIBILD? • All your health problems. Be sure to tell your healthcare provider if you have or had any kidney, bone, or liver problems, including hepatitis virus infection. • All the medicines you take, including prescription and nonprescription medicines, vitamins, and herbal supplements. STRIBILD may affect the way other medicines work, and other medicines may affect how STRIBILD works. Keep a list of all your medicines and show it to your healthcare provider and pharmacist. Do not start any new medicines while taking STRIBILD without ﬁrst talking with your healthcare provider. • If you take hormone-based birth control (pills, patches, rings, shots, etc). • If you take antacids. Take antacids at least 2 hours before or after you take STRIBILD. • If you are pregnant or plan to become pregnant. It is not known if STRIBILD can harm your unborn baby. Tell your healthcare provider if you become pregnant while taking STRIBILD. • If you are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed. HIV-1 can be passed to the baby in breast milk. Also, some medicines in STRIBILD can pass into breast milk, and it is not known if this can harm the baby. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088. Please see Brief Summary of full Prescribing Information with important warnings on the following pages. *STRIBILD is a combination of the medicines TRUVADA (emtricitabine and tenofovir disoproxil fumarate), TYBOST (cobicistat), and VITEKTA (elvitegravir).
STRIBILD is a prescription medicine used to treat HIV-1 in adults who have never taken HIV-1 medicines before. STRIBILD can also replace current HIV-1 medicines for some adults who have an undetectable viral load (less than 50 copies/mL of virus in their blood) and whose healthcare provider determines that they meet certain other requirements. STRIBILD does not cure HIV-1or AIDS.
I started my personal revolution Talk to your healthcare provider about HIV-1 treatment. STRIBILD is a complete HIV-1 treatment in 1 pill, once a day that combines the medicines in TRUVADA + TYBOST + VITEKTA.* Ask if itâ€™s right for you.
Patient Information STRIBILD® (STRY-bild) (elvitegravir 150 mg/cobicistat 150 mg/emtricitabine 200 mg/ tenofovir disoproxil fumarate 300 mg) tablets Brief summary of full Prescribing Information. For more information, please see the full Prescribing Information, including Patient Information. What is STRIBILD? • STRIBILD is a prescription medicine used to treat HIV-1 in adults who have never taken HIV-1 medicines before. STRIBILD can also be used to replace current HIV-1 medicines for some adults who have an undetectable viral load (less than 50 copies/mL of virus in their blood), and have been on the same HIV-1 medicines for at least 6 months and have never failed past HIV-1 treatment, and whose healthcare provider determines that they meet certain other requirements. • STRIBILD is a complete HIV-1 medicine and should not be used with any other HIV-1 medicines. • STRIBILD does not cure HIV-1 or AIDS. You must stay on continuous HIV-1 therapy to control HIV-1 infection and decrease HIV-related illnesses. • Ask your healthcare provider about how to prevent passing HIV-1 to others. Do not share or reuse needles, injection equipment, or personal items that can have blood or body fluids on them. Do not have sex without protection. Always practice safer sex by using a latex or polyurethane condom to lower the chance of sexual contact with semen, vaginal secretions, or blood. What is the most important information I should know about STRIBILD? STRIBILD can cause serious side effects, including: 1. Build-up of lactic acid in your blood (lactic acidosis). Lactic acidosis can happen in some people who take STRIBILD or similar (nucleoside analogs) medicines. Lactic acidosis is a serious medical emergency that can lead to death. Lactic acidosis can be hard to identify early, because the symptoms could seem like symptoms of other health problems. Call your healthcare provider right away if you get any of the following symptoms which could be signs of lactic acidosis: • 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 2. Severe liver problems. Severe liver problems can happen in people who take STRIBILD. In some cases, these liver problems can lead to death. Your liver may become large (hepatomegaly) and you may develop fat in your liver (steatosis). Call your healthcare provider right away if you get any of the following symptoms of liver problems: • your skin or the white part of your eyes turns yellow (jaundice) • dark “tea-colored” urine • light-colored bowel movements (stools) • loss of appetite for several days or longer • nausea • stomach pain You may be more likely to get lactic acidosis or severe liver problems if you are female, very overweight (obese), or have been taking STRIBILD for a long time. 3. Worsening of Hepatitis B infection. If you have hepatitis B virus (HBV) infection and take STRIBILD, your HBV may get worse (flare-up) if you stop taking STRIBILD. A “flare-up” is when your HBV infection suddenly returns in a worse way than before.
• Do not run out of STRIBILD. Refill your prescription or talk to your healthcare provider before your STRIBILD is all gone • Do not stop taking STRIBILD without first talking to your healthcare provider • If you stop taking STRIBILD, your healthcare provider will need to check your health often and do blood tests regularly for several months to check your HBV infection. Tell your healthcare provider about any new or unusual symptoms you may have after you stop taking STRIBILD Who should not take STRIBILD? Do not take STRIBILD if you also take a medicine that contains: • adefovir (Hepsera®) • alfuzosin hydrochloride (Uroxatral®) • cisapride (Propulsid®, Propulsid Quicksolv®) • ergot-containing medicines, including: dihydroergotamine mesylate (D.H.E. 45®, Migranal®), ergotamine tartrate (Cafergot®, Migergot®, Ergostat®, Medihaler Ergotamine®, Wigraine®, Wigrettes®), and methylergonovine maleate (Ergotrate®, Methergine®) • lovastatin (Advicor®, Altoprev®, Mevacor®) • midazolam, when taken by mouth • pimozide (Orap®) • rifampin (Rifadin®, Rifamate®, Rifater®, Rimactane®) • sildenafil (Revatio®), when used for treating lung problems • simvastatin (Simcor®, Vytorin®, Zocor®) • triazolam (Halcion®) • the herb St. John’s wort Do not take STRIBILD if you also take any other HIV-1 medicines, including: • Other medicines that contain elvitegravir, cobicistat, emtricitabine, or tenofovir (Atripla®, Complera®, Emtriva®, Truvada®, Tybost®, Viread®, Vitekta®) • Other medicines that contain lamivudine or ritonavir (Combivir®, Epivir® or Epivir-HBV®, Epzicom®, Kaletra®, Norvir®, Triumeq®, Trizivir®) STRIBILD is not for use in people who are less than 18 years old. What are the possible side effects of STRIBILD? STRIBILD may cause the following serious side effects: • See “What is the most important information I should know about STRIBILD?” • New or worse kidney problems, including kidney failure. Your healthcare provider should do blood and urine tests to check your kidneys before you start and while you are taking STRIBILD. Your healthcare provider may tell you to stop taking STRIBILD if you develop new or worse kidney problems. • Bone problems can happen in some people who take STRIBILD. Bone problems include bone pain, softening or thinning (which may lead to fractures). Your healthcare provider may need to do tests to check your bones. • Changes in body fat can happen in people who take HIV-1 medicine. These changes may include increased amount of fat in the upper back and neck (“buffalo hump”), breast, and around the middle of your body (trunk). Loss of fat from the legs, arms and face may also happen. The exact cause and long-term health effects of these conditions are not known. • Changes in your immune system (Immune Reconstitution Syndrome) can happen when you start taking HIV-1 medicines. Your immune system may get stronger and begin to fight infections that have been hidden in your body for a long time. Tell your healthcare provider right away if you start having any new symptoms after starting your HIV-1 medicine.
The most common side effects of STRIBILD include:
- disopyramide (Norpace®)
- ethosuximide (Zarontin®)
Tell your healthcare provider if you have any side effect that bothers you or that does not go away.
- flecainide (Tambocor®)
• These are not all the possible side effects of STRIBILD. For more information, ask your healthcare provider.
- fluticasone (Flovent®, Flonase®, Flovent Diskus®, Flovent HFA®, Veramyst®)
• Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.
- itraconazole (Sporanox®)
What should I tell my healthcare provider before taking STRIBILD? Tell your healthcare provider about all your medical conditions, including:
- ketoconazole (Nizoral®) - lidocaine (Xylocaine®) - mexiletine - oxcarbazepine (Trileptal®)
• If you have or had any kidney, bone, or liver problems, including hepatitis B infection
• If you are pregnant or plan to become pregnant. It is not known if STRIBILD can harm your unborn baby. Tell your healthcare provider if you become pregnant while taking STRIBILD.
- phenytoin (Dilantin®, Phenytek®)
- There is a pregnancy registry for women who take antiviral medicines during pregnancy. The purpose of this registry is to collect information about the health of you and your baby. Talk with your healthcare provider about how you can take part in this registry. • If you are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed if you take STRIBILD. - You should not breastfeed if you have HIV-1 because of the risk of passing HIV-1 to your baby. - Two of the medicines in STRIBILD can pass to your baby in your breast milk. It is not known if the other medicines in STRIBILD can pass into your breast milk. - Talk with your healthcare provider about the best way to feed your baby. Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements: • STRIBILD may affect the way other medicines work, and other medicines may affect how STRIBILD works. • Be sure to tell your healthcare provider if you take any of the following medicines: - Hormone-based birth control (pills, patches, rings, shots, etc) - Antacid medicines that contain aluminum, magnesium hydroxide, or calcium carbonate. Take antacids at least 2 hours before or after you take STRIBILD - Medicines to treat depression, organ transplant rejection, or high blood pressure - amiodarone (Cordarone®, Pacerone®) - atorvastatin (Lipitor®, Caduet®) - bepridil hydrochloride (Vascor®, Bepadin®) - bosentan (Tracleer®) - buspirone - carbamazepine (Carbatrol®, Epitol®, Equetro®, Tegretol®) - clarithromycin (Biaxin®, Prevpac®) - clonazepam (Klonopin®) - clorazepate (Gen-xene®, Tranxene®) - colchicine (Colcrys®) - medicines that contain dexamethasone - diazepam (Valium®) - digoxin (Lanoxin®)
- phenobarbital (Luminal®) - propafenone (Rythmol®) - quinidine (Neudexta®) - rifabutin (Mycobutin®) - rifapentine (Priftin®) - risperidone (Risperdal®, Risperdal Consta®) - salmeterol (Serevent®) or salmeterol when taken in combination with fluticasone (Advair Diskus®, Advair HFA®) - sildenafil (Viagra®), tadalafil (Cialis®) or vardenafil (Levitra®, Staxyn®), for the treatment of erectile dysfunction (ED). If you get dizzy or faint (low blood pressure), have vision changes or have an erection that last longer than 4 hours, call your healthcare provider or get medical help right away. - tadalafil (Adcirca®), for the treatment of pulmonary arterial hypertension - thioridazine - voriconazole (Vfend®) - warfarin (Coumadin®, Jantoven®) - zolpidem (Ambien®, Edlular®, Intermezzo®, Zolpimist®) Know the medicines you take. Keep a list of all your medicines and show it to your healthcare provider and pharmacist when you get a new medicine. Do not start any new medicines while you are taking STRIBILD without first talking with your healthcare provider. Keep STRIBILD and all medicines out of reach of children. This Brief Summary summarizes the most important information about STRIBILD. If you would like more information, talk with your healthcare provider. You can also ask your healthcare provider or pharmacist for information about STRIBILD that is written for health professionals, or call 1-800-445-3235 or go to www.STRIBILD.com. Issued: December 2014
COMPLERA, EMTRIVA, GILEAD, the GILEAD Logo, GSI, HEPSERA, STRIBILD, the STRIBILD Logo, TRUVADA, TYBOST, VIREAD, and VITEKTA are trademarks of Gilead Sciences, Inc., or its related companies. ATRIPLA is a trademark of Bristol-Myers Squibb & Gilead Sciences, LLC. All other marks referenced herein are the property of their respective owners. © 2015 Gilead Sciences, Inc. All rights reserved. STBC0180 03/15
I’ve had a long history working with people living with AIDS, so I knew this was a community that I wanted to be a part of. — Nkatha, Rider No. 95
ork o new Y
7, 2 2 – 5 2 r mbe
c o n t e n t s July 2015
32 Cover Actor & AIDS Activist Daniel Franzese Talks with A&U’s Dann Dulin About the Benefits of PrEP, Bringing the Fight to Capitol Hill & the Blessings of Playing a Self-Assured and Lovable Character Living with HIV
Features 26 Gallery Housing Works Knows that Self-Empowerment Can Be Heroic 30 PrEPing Up for the Fight Former NFL Player Wade Davis Helps Launch AIDS Alabama’s New Prevention Campaign 36 PrEP School Advocates of PrEP Raise Awareness & Introduce the Prevention Tool to the Community & Physicians
TYing It All Together
A Woman’s Voice
40 What the Patients Ordered Joe Garland Recalls the Special Doctor-Patient Bonds He Nurtured as He Readies to Leave Philadelphia FIGHT
The Whole Perspective
24 Fiction As If by Normal Belanger
The Culture of AIDS
cover by Sean Black
Prevention: The Sequel
ust when you thought it was safe to go back in the water.... As I watch news coverage of the recent shark attacks off the Carolinas, I’m reminded of the movie sequel tagline. Jaws 2 tried to recapture the horror of Spielberg’s summer blockbuster, but it sunk as quickly as a deflating raft. Oh, it made money and provided some chills and thrills, but audiences dropped away. Fearsome images are like that—they may strike panic for a while, but the panic fades and your everyday practices of protecting yourself become waterlogged. I’m not trying to be glib about the recent shark attacks, but, as many have pointed out, these attacks are just not that common. And they seem to be getting more play than the seven or eight Black churches in the South that were recently burned to the ground in the wake of calls for anti-racist progressive change after the tragic shooting in Charleston. What I am trying to point out is that safer-sex messaging based on fear is a “franchise” that needs to be retired once and for all. Fear-based messaging may heighten awareness among sexually active individuals for a brief time, but it does not zero in on how individuals go about their daily lives. Individuals have sex, and sometimes they think about protection and sometimes they don’t. Sometimes they are aware of risks, and sometimes they aren’t. We need something stronger than telling individuals to just say no to lesssafe sex because you can never trust anyone, because HIV is swimming around out there like a ravenous shark, because a sexual partner is a boogeyman. HIV is a fact of life—it shouldn’t be wrapped in moral platitudes or stigmazing discourse. PrEP is that something stronger. Its efficacy as a prevention method is built upon a solid scientific foundation. Adherent use provides more than excellent protection. Our cover story subject, actor and AIDS activist Daniel Franzese is a proponent of PrEP, encouraging his friends to seek out its benefits. “We need to talk about getting rid of these
A M E R I C A’ S A I D S M A G A Z I N E issue 249 vol. 24 no. 7 July 2015 editorial offices: (518) 426-9010 fax: (518) 436-5354
abstinence programs and bringing back needle-exchange programs which work. Abstinence programs do not. We... need...to...be...realistic,” he shares. But what is very revolutionary about PrEP is that it has reignited a new era of counseling and care. The PrEP programs that Larry Buhl reports on in this issue are not based on “handing out pills.” These programs actively enroll individuals, and very often, those individuals are negative or status-unknown gay and bi men, into a prevention program that includes testing, counseling, linkages to care, and an ongoing dialogue about staying in care. In short PrEP has helped to empower individuals to be proactive about their healthcare in general and their sexual health and selfcare in particular. In doing so, our PrEP practices potentially bridge the structural inequities that create an environment of risk and our individual histories, flush with the thoughts and feelings that make us feel that we cannot change the status quo, personal or societal. Former NFL player and LGBT activist Wade Davis has stepped up to the cause, as Alina Oswald reports. As an ambassador for PrEP Up Alabama, he is helping to launch AIDS Alabama’s latest prevention campaign. The campaign is reaching out to young men who have sex with men, particularly Black and Latino men, who are reportedly the least connected to care among gay and bi men. Importantly, Housing Works’ newest online social media campaign, #PrEPHeroes, reverses the notion that we are waiting to be rescued. As the stunning images in this month’s Gallery attest, we are the heroes of our own lives. We can rise to the challenge of empowering ourselves and helping to empower others. Don’t get me wrong, I’m all for sequels. But those second and third chapters of our lives should take us in new, liberating directions—not retread the same old fears just because that’s what’s expected.
Editor in Chief & Publisher David Waggoner Managing Editor: Michael Needle Senior Editors: Dann Dulin, Sean Black Editor at Large: Chip Alfred Special Projects Editor: Lester Strong Literary Editor: Brent Calderwood Arts Editor: Alina Oswald Consulting Editor: Nick Steele Copy Editor: Maureen Hunter Contributing Editors: Sarah Churchill Downes, Reed Massengill, Kelly McQuain, Lesléa Newman, Robert E. Penn Contributing Writers: Noël Alumit, V. Anderson, Heather Arculeo, Larry Buhl, Ruby Comer, Nancy Ellegate, Diane Goettel, Sally Hessney, Keiko Lane, Angela Leroux-Lindsey, Sherri Lewis, Mark Rebernik, Dale Reynolds, Elizabeth Rodgers, David Rosenberg, Corey Saucier, Mariel Selbovitz, Justin B. Terry-Smith, Patricia Nell Warren, Chuck Willman, Jeannie Wraight, Robert Zukowski Art Director: Timothy J. Haines Contributing Photographers: Jordan Ancel, Davidd Batalon, Mark Bennington, Tom Bianchi, Sean Black, Adam Bouska, Brian Bowen Smith, Fred Brashear, Jr., Tim Courtney, Duane Cramer, Stephen Churchill Downes, Greg Gorman, Francis Hills, Renée Jacobs, Tara Lessard, Tom McGovern, Nancy Perry, Annie Tritt National Advertising Director: Harold Burdick, Jr. Sales & Marketing: David L. Bonitatibus Advertising Sales Office: (518) 426-9010 National Advertising Representative: Rivendell Media (212) 242-6863 Subscription Info: (518) 426-9010 Circulation Manager: Robert Schelepanow Bookkeeper: Richard Garcia Board of Directors President: David Waggoner Vice President: Harold Burdick, Jr. Secretary: Richard Garcia Founding Board Members: Mark S. Labrecque, 1961–1992, Christopher Hewitt, 1946–2004, Mark Galbraith, 1962–2011 In Memoriam: Bill Jacobson, 1939–2005 Rhomylly B. Forbes, 1963–2011 Chris Companik, 1957–2012 A&U (ISSN 1074-0872) is published by Art & Understanding, Inc., 25 Monroe St., Suite 205, Albany, NY 12210-2743, USA. For A&U advertising information please call 518-426-9010; for subscriptions and address changes please call 518-426-9010; for letters to the editor and unsolicited manuscripts write A&U Magazine, 25 Monroe Street, Albany, New York 12210; fax 518-436-5354; or e-mail: mailbox@ aumag.org. All unsolicited manuscripts that do not have a S.A.S.E. cannot be returned and will not be acknowledged. ©2015 Art & Understanding, Inc. ALL RIGHTS RESERVED. A&U may not be reproduced in any manner, either in whole or in part, without written permission of the publisher. A&U and the graphic representations thereof are the registered trademarks of Art & Understanding, Inc., a 501 (c) (3) nonprofit organization. Individual Subscription rates: $24.95 (12 issues). Institutional rates: $80.00 (12 issues). For subscriptions outside the USA and possessions, $30.95/Canada, $49.95/international, payable in advance in U.S. currency. First North American serial rights revert to contributors upon publication. A&U retains the right to anthologize work in further issues, as well as in microform or reprinting on the Internet within the context of each issue. Statements of writers, artists and advertisers are not necessarily those of the publisher. Readers note: subjects and contributors to A&U are both HIV-positive and HIV-negative. In the absence of a specific statement herein concerning the serostatus of any individual mentioned in, or contributing material to, this publication, no inference is made with respect thereto and none should be implied. Letters written to A&U or its contributors are assumed intended for publication. Art & Understanding, Inc. assumes no responsibility or liability for unsolicited submissions and does not guarantee the return thereof. PostMaster: Please send address corrections to A&U Magazine, 25 Monroe Street, Suite 205, Albany NY 12210-2743, USA
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WE KNOW HIV/AIDS medication therapy But we also know you want a pharmacy that cares for the whole you. That’s why the pharmacists at our HIV-specialized pharmacies offer complete, compassionate care for your individual needs now and in the years ahead. You can rely on us to provide services such as: • Expert guidance in managing HIV, combined with other conditions you may have • A range of immunizations to help you avoid illness*
To learn more, visit HIV.Walgreens.com. * Vaccines subject to availability. Not all vaccines available in all locations. State-, age- and health-related restrictions may apply.
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x o b l i ma I got real hot and bothered when I saw your cover. I found Jay Ellis very sizzling and very sexy [cover story, “Blueprint for Champions,” by Dann Dulin, May 2015]. What a hunk, what a man. I could go on
MAY 2015 • ISSUE 247 • AMERICA’S AIDS MAGAZINE
THE ACTOR & AIDS ADVOCATE IS ON THE RIDE OF HIS LIFE
HIV IN THE SOUTH
THE HARD-HIT REGION FIGHTS TO PROVIDE ACCESS TO HIV CARE
Food Is Medicine GOD’S LOVE WE DELIVER IS 30 & LOVING IT
plus • Benjamin Fredrickson • Insurance Barriers • Fabian Quezada-Malkin
about Jay Ellis, but your magazine covers serious subjects so let me address that too. Jay seems to be a very smart and intelligent person. It’s just wonderful and so caring that he is committed to fighting HIV and AIDS. I am very interested about our youth and AIDS, especially black kids. Jay, in part, says, “We have to do a better job of reaching out to the youth. HIV/ AIDS awareness needs to be discussed in high schools, in youth programs and at community centers. Everyone must get tested.” Great comment, Jay. Save our black youth. —Samantha Singleton Fort Lauderdale, Florida Jay Ellis, I would like to go on a date
Down & Out The answer to your headline: “What’s Really Going on Down South and What Needs to be Done to Turn the Tide?” [“Southern Exposure,” by Chip Alfred, May 2015]. The answer is that you’re dealing with a lot of ignorance and backwardness; you’re dealing with a lot of homophobia and AIDSphobia. The South is a region that still lives in the past. The South still believes that “homosexuals” are cursed to hell and people that are “infected with AIDS” deserve what they got. They just don’t care about homos with AIDS.
“Jay, in part, says, ‘We have to do a better job of reaching out to the youth. HIV/AIDS awareness needs to be discussed in high schools, in youth programs and at community centers. Everyone must get tested.’ Great comment, Jay. Save our black youth.”
The Price Is Not Right I found Larry Buhl’s article on the health insurance industry to be a real eye-opener [“Adverse Effects,” May 2015]. To me it’s downright scandalous and horrifying how these companies don’t want to cover the cost of medicine, particularly the cost of AIDS medications for people suffering from AIDS. I am gladdened that the government is finally cracking down and making these companies bring down their high prices for what they charge to the people least able to pay for medications. There is hope; thank God they’re doing the right thing. —Waldo Farmington Woodward Boston, Massachusetts
It’s going to take lots of time and lots of education to change things. It’s going to take a tsunami to change the South. —Mark Van Gerren Roanoke, Virginia
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A&U • JULY 2015
photo by Sean Black
Getting inThe Game
with you—you’re just so good looking. I just love The Game; it’s one of my favorite shows. It’s great to see someone so young so concerned about AIDS. And people need to be awakened and concerned. AIDS has affected so many of my loved ones—I have lost eight family members to AIDS. Jay, I just love you. —Marsha Rumbaugh East Rutherford, New Jersey
NEWSBREAK PrEP Implant With adherence to PrEP a key in its success to prevent the transmission of HIV-1, a new method may help assure individuals are protecting themselves in a consistent way. Researchers are working on a subdermal implant, using a model that has been used in contraception since 1993 in the U.S. The matchstick-size tubular implant would provide a controlled, sustained release of prodrug tenofovir alafenamide (TAF is a more potent experimental formulation of the current oral PrEP drug, tenofovir disoproxil fumarate or TDF). Insertion and removal of the upper-arm implant would be done with ease. The implant is being developed by Oak Crest Institute of Science in Pasadena, California. Results from preliminary studies involving the use of the implant in beagles were published in a recent issue of Antimicrobial Agents and Chemotherapy, by Manjula Gunawardana et al. According to the researchers, proof of principle has been established. The implant was able to successfully deliver the produg for up to forty days without any adverse side effects. Over the first thirty-five days, researchers observed concentrations of TFV diphosphate in peripheral blood mononuclear cells at levels over thirty times higher than those associated with human-based HIV-1 PrEP efficacy. The plan is to delevop a PrEP implant that could remain effective for twelve months. When it comes to PrEP, however, the delivery method means little if individuals are not empowered when it comes to their sexual health. Advocates recommend behavioral and structural level interventions, such as safer-sex education and outreach to lessen family and community-based stigma, respectively, ones that help dismantle the environment for increased HIV vulnerability.
photos by Mike Pingel
Life’s Hurrah In late May, The City of West Hollywood honored The Life Group LA for its work providing services to individuals living with HIV/AIDS and others. During a kick-off party for the non-profit’s annual fundraising event, Saddle Up LA, the City of WeHo’s Human Services Manager of Social Services David Giugni presented the commendation to Sunnie Rose Berger, Life Group’s co-founder and Executive Director. Going strong for ten years, Life Group LA offers education, empowerment and emotional support to individuals who are living with and affected by HIV/ Actor Jai Rodriguez has his own riding AIDS so that they may make decisions about healthcare team, Jai’s Jockey’s. and personal wellbeing in an informed manner. Peer support groups and the POZ Life Weekend Seminar are two of the ways that the non-profit fulfills its mission. Said Berger in a prepared release: “We are very grateful for the support the City of West Hollywood has given us since our inception. They understand the value of what our POZ Life Weekend Seminars offer the community and want to help insure we are here for those who need us when they need us and not only in their city, but in greater L.A. as well.” Singer Pepper Mashay met her wife at On July 11, the 10th Annual “Saddle Up LA,” an her first Saddle Up LA ride AIDS Benefit Horseback Trail Ride and Country BBQ, David Giugni presents a will offer participants an unforgettable experience in commendation from the City of the scenic Griffith Park Mountains. The organization hopes the event will raise $100,000, with West Hollywood to Life Group all proceeds helping The Life Group LA to continue its vital work. The event also seeks to “raise LA’s Sunnie Rose Berger at a awareness of the fact that the AIDS pandemic is not over. The ride is an affirmation of the power kick-off party for Saddle Up LA of compassion and a demonstration that ordinary people can accomplish extraordinary things.” Even if you do not ride, you can still attend the barbeque. The fun continues with a dinner dance and a silent auction. For more information, log on to: www.lifegroupla.org and www.SaddleUpLA.org. JULY 2015 • A&U
WHAT IS PREZCOBIX™ ?
• It is not known if PREZCOBIX™ is safe and effective in children under 18 years of age. • When used with other antiretroviral medicines to treat HIV-1 infection, PREZCOBIX™ may help:
Medihaler,® Migergot,® Wigraine,® Wigrettes®), methylergonovine (Methergine®), lovastatin or a product that contains lovastatin (Altoprev,® Advicor,® Mevacor ®), lurasidone (Latuda®), oral midazolam (Versed®), pimozide (Orap®), ranolazine (Ranexa®), rifampin (Rifadin,® Rifater,® Rifamate®, Rimactane®), sildenafil (Revatio®) when used for pulmonary arterial hypertension (PAH), simvastatin or a product that contains simvastatin (Simcor,® Vytorin,® Zocor ®), St. John’s Wort (Hypericum perforatum) or a product that contains St. John’s Wort, or triazolam (Halcion®).
○ reduce the amount of HIV-1 in your blood. This is called “viral load.”
• Serious problems can happen if you take any of these medicines with PREZCOBIX.™
○ increase the number of CD4+ (T) cells in your blood that help fight off other infections.
What should I tell my healthcare provider before taking PREZCOBIX™ ?
• PREZCOBIX™ is always taken in combination with other HIV medications for the treatment of HIV-1 infection in adults. PREZCOBIX™ should be taken once daily with food. • PREZCOBIX™ does not cure HIV-1 infection or AIDS, and you may still experience illnesses associated with HIV-1 infection. You must keep taking HIV-1 medicines to control HIV-1 infection and decrease HIV-related illnesses. • Ask your healthcare provider if you have any questions on how to prevent passing HIV to other people. • Please read the Important Safety Information below and talk to your healthcare provider to learn if PREZCOBIX™ is right for you.
• About all health problems. Tell your healthcare provider if you have liver problems, including hepatitis B or hepatitis C, have kidney problems, are allergic to sulfa (sulfonamide), have diabetes, have hemophilia, or have any other medical condition, are pregnant, breastfeeding, or plan to become pregnant or breastfeed. Tell your healthcare provider if you become pregnant while taking PREZCOBIX.™ • About all medicines you take. Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. Some medicines interact with PREZCOBIX.™ Keep a list of your medicines to show your healthcare provider and pharmacist. Do not start taking a new medicine without telling your healthcare provider. Your healthcare provider can tell you if it is safe to take PREZCOBIX™ with other medicines.
IMPORTANT SAFETY INFORMATION
What are the possible side effects of PREZCOBIX™ ?
What is the most important information I should know about PREZCOBIX™ ?
• The most common side effects of darunavir, one of the medicines in PREZCOBIX,™ include diarrhea, nausea, rash, headache, stomach area (abdominal) pain, and vomiting.
• PREZCOBIX™ may cause liver problems. Some people taking PREZCOBIX™ may develop liver problems which may be life-threatening. Your healthcare provider should do blood tests before and during your treatment with PREZCOBIX.™ ○ Chronic hepatitis B or C infection may increase your chance of developing liver problems. Your healthcare provider should check your blood tests more often. ○ Signs and symptoms of liver problems include dark (tea-colored) urine, yellowing of your skin or whites of your eyes, pale-colored stools (bowel movements), nausea, vomiting, pain or tenderness on your right side below your ribs, or loss of appetite. Tell your healthcare provider if you develop any of these symptoms. • PREZCOBIX™ may cause severe or life-threatening skin reactions or rash. Sometimes these skin reactions and skin rashes can become severe and require treatment in a hospital. Call your healthcare provider right away if you develop a rash. ○ Stop taking PREZCOBIX™ and call your healthcare provider right away if you develop any skin changes with symptoms such as fever, tiredness, muscle or joint pain, blisters or skin lesions, mouth sores or ulcers, red or inflamed eyes like “pink eye” (conjunctivitis). • PREZCOBIX,™ when taken with certain other medicines, can cause new or worse kidney problems, including kidney failure. Your healthcare provider should check your kidneys before you start and while you are taking PREZCOBIX.™ Who should not take PREZCOBIX™ ? • Do not take PREZCOBIX™ with any of the following medicines: alfuzosin (Uroxatral®), cisapride (Propulsid,® Propulsid® Quicksolv), colchicine (Colcrys,® Mitigare,® if you have liver or kidney problems), dronedarone (Multaq®), dihydroergotamine (D.H.E.45®, Embolex ,® Migranal®), ergotamine tartrate (Cafergot ,® Ergomar ®, Ergostat ,®
• Other possible side effects include: ○ High blood sugar, diabetes or worsening diabetes, and increased bleeding in people with hemophilia have been reported in patients taking protease inhibitor medicines, including PREZCOBIX.™ ○ Changes in body fat can happen in people who take HIV-1 medicines. The exact cause and long-term health effects of these changes are not known. ○ Changes in your immune system (Immune Reconstitution Syndrome) can happen when you start taking HIV medicines. Your immune system may get stronger and begin to fight infections that have been hidden in your body for a long time. These are not all of the possible side effects of PREZCOBIX.™ For more information, ask your healthcare provider. Tell your healthcare provider if you have any side effect that bothers you or that does not go away. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1-800-FDA-1088. Please see accompanying full Product Information for more details. Janssen Therapeutics, Division of Janssen Products, LP © Janssen Therapeutics, Division of Janssen Products, LP 2015 01/15 008417-140113
• PREZCOBIX™ is a prescription HIV-1 (Human Immunodeficiency Virus 1) medicine used with other antiretroviral medicines to treat HIV-1 infection in adults. HIV is the virus that causes AIDS (Acquired Immune Deficiency Syndrome). PREZCOBIX™ contains the prescription medicines PREZISTA® (darunavir) and TYBOST® (cobicistat).
Wisdom inspired by real people
DISCOVER YOUR WISDOM WITHIN
Visit PREZCOBIX.com to hear wisdom inspired by experts and people like you living with HIV. Ask your provider if Once-Daily* PREZCOBIX™ is right for you.
PREZCOBIX.com *PREZCOBIX™ is taken in combination with other HIV medications for the treatment of HIV-1 infection in adults.
IMPORTANT PATIENT INFORMATION PATIENT INFORMATION PREZCOBIX (prez-koe-bix) (darunavir and cobicistat) tablets Please read this information before you start taking PREZCOBIX and each time you get a refill. There may be new information. This information does not take the place of talking with your healthcare provider about your medical condition or treatment. What is the most important information I should know about PREZCOBIX? • PREZCOBIX may cause liver problems. Some people taking PREZCOBIX may develop liver problems which may be lifethreatening. Your healthcare provider should do blood tests before and during your treatment with PREZCOBIX. If you have chronic hepatitis B or C infection, your healthcare provider should check your blood tests more often because you have an increased chance of developing liver problems. Tell your healthcare provider if you have any of the below signs and symptoms of liver problems. • dark (tea colored) urine • yellowing of your skin or whites of your eyes • pale colored stools (bowel movements) • nausea • vomiting • pain or tenderness on your right side below your ribs • loss of appetite • PREZCOBIX may cause severe or life-threatening skin reactions or rash. Sometimes these skin reactions and skin rashes can become severe and require treatment in a hospital. Call your healthcare provider right away if you develop a rash. Stop taking PREZCOBIX and call your healthcare provider right away if you develop any skin changes with symptoms below: • fever • tiredness • muscle or joint pain • blisters or skin lesions • mouth sores or ulcers • red or inflamed eyes, like “pink eye” (conjunctivitis) • PREZCOBIX when taken with certain other medicines can cause new or worse kidney problems, including kidney failure. Your healthcare provider should check your kidneys before you start and while you are taking PREZCOBIX. See “What are the possible side effects of PREZCOBIX?” for more information about side effects. What is PREZCOBIX? PREZCOBIX is a prescription HIV-1 (Human Immunodeficiency Virus 1) medicine used with other antiretroviral medicines to treat HIV-1 infection in adults. HIV is the virus that causes AIDS (Acquired Immune Deficiency Syndrome). PREZCOBIX contains the prescription medicines PREZISTA (darunavir) and TYBOST (cobicistat). It is not known if PREZCOBIX is safe and effective in children under 18 years of age. When used with other antiretroviral medicines to treat HIV-1 infection, PREZCOBIX may help: • reduce the amount of HIV-1 in your blood. This is called “viral load”.
• i ncrease the number of CD4+ (T) cells in your blood that help fight off other infections. Reducing the amount of HIV-1 and increasing the CD4+ (T) cells in your blood may help improve your immune system. This may reduce your risk of death or getting infections that can happen when your immune system is weak (opportunistic infections). PREZCOBIX does not cure HIV-1 infection or AIDS. You must keep taking HIV-1 medicines to control HIV-1 infection and decrease HIV-related illnesses. Avoid doing things that can spread HIV-1 infection to others. • Do not share or re-use needles or other injection equipment. • Do not share personal items that can have blood or body fluids on them, like toothbrushes and razor blades. • Do not have any kind of sex without protection. Always practice safe sex by using a latex or polyurethane condom to lower the chance of sexual contact with semen, vaginal secretions, or blood. Ask your healthcare provider if you have any questions on how to prevent passing HIV to other people. Who should not take PREZCOBIX? Do not take PREZCOBIX with any of the following medicines: • alfuzosin (Uroxatral®) • cisapride (Propulside®, Propulsid® Quicksolv) • colchicine (Colcrys®, Mitigare®), if you have liver or kidney problems • dronedarone (Multaq®) • ergot-containing medicines: • dihydroergotamine (D.H.E. 45®, Embolex®, Migranal®) • ergotamine tartrate (Cafergot®, Ergomar®, Ergostat®, Medihaler®, Migergot®, Wigraine®, Wigrettes®) • methylergonovine (Methergine®) • lovastatin or a product that contains lovastatin (Altoprev®, Advicor®, Mevacor®) • lurasidone (Latuda®) • midazolam (Versed®), when taken by mouth • pimozide (Orap®) • ranolazine (Ranexa®) • rifampin (Rifadin®, Rifater®, Rifamate®, Rimactane®) • sildenafil (Revatio®), when used for the treatment of pulmonary arterial hypertension (PAH) • simvastatin or a product that contains simvastatin (Simcor®, Vytorin®, Zocor®) • St. John’s Wort (Hypericum perforatum), or a product that contains St. John’s Wort • triazolam (Halcion®) Serious problems can happen if you take any of these medicines with PREZCOBIX. What should I tell my healthcare provider before taking PREZCOBIX? Before taking PREZCOBIX, tell your healthcare provider if you: • have liver problems, including hepatitis B or hepatitis C • have kidney problems • are allergic to sulfa (sulfonamide) • have diabetes • have hemophilia • have any other medical condition
IMPORTANT PATIENT INFORMATION • a re pregnant or plan to become pregnant. It is not known if PREZCOBIX will harm your unborn baby. Tell your healthcare provider if you become pregnant while taking PREZCOBIX. • Pregnancy Registry: There is a pregnancy registry for women who take antiretroviral medicines during pregnancy. The purpose of the registry is to collect information about the health of you and your baby. Talk to your healthcare provider about how you can take part in this registry. • are breastfeeding or plan to breastfeed. Do not breastfeed if you take PREZCOBIX. • You should not breastfeed if you have HIV-1 because of the risk of passing HIV to your baby. • It is not known if PREZCOBIX can pass into your breast milk. • Talk to your healthcare provider about the best way to feed your baby. Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. Some medicines interact with PREZCOBIX. Keep a list of your medicines to show your healthcare provider and pharmacist. • You can ask your healthcare provider or pharmacist for a list of medicines that interact with PREZCOBIX. • Do not start taking a new medicine without telling your healthcare provider. Your healthcare provider can tell you if it is safe to take PREZCOBIX with other medicines. How should I take PREZCOBIX? • Take PREZCOBIX exactly as your healthcare provider tells you. • Do not change your dose or stop taking PREZCOBIX without talking to your healthcare provider. • Take PREZCOBIX 1 time a day with food. • If you miss a dose of PREZCOBIX by less than 12 hours, take your missed dose of PREZCOBIX right away. Then take your next dose of PREZCOBIX at your regularly scheduled time. • If you miss a dose of PREZCOBIX by more than 12 hours, wait and then take the next dose of PREZCOBIX at your regularly scheduled time. • If a dose of PREZCOBIX is skipped, do not double the next dose. Do not take more or less than your prescribed dose of PREZCOBIX at any one time. • If you take too much PREZCOBIX, call your healthcare provider or go to the nearest hospital emergency room right away. What are the possible side effects of PREZCOBIX? PREZCOBIX may cause serious side effects including: • See “What is the most important information I should know about PREZCOBIX?” • Diabetes and high blood sugar (hyperglycemia). Some people who take protease inhibitors including PREZCOBIX can get high blood sugar, develop diabetes, or your diabetes can get worse. Tell your healthcare provider if you notice an increase in thirst or urinate often while taking PREZCOBIX. • Changes in body fat can happen in people who take HIV-1 medications. The changes may include an increased amount of fat in the upper back and neck (“buffalo hump”), breast, and around the middle of your body (trunk). Loss of fat from the legs, arms, and face may also happen.
The exact cause and long-term health effects of these conditions are not known. • Changes in your immune system (Immune Reconstitution Syndrome) can happen when you start taking HIV-1 medicines. Your immune system may get stronger and begin to fight infections that have been hidden in your body for a long time. Tell your healthcare provider right away if you start having new symptoms after starting your HIV-1 medicine. • Increased bleeding for hemophiliacs. Some people with hemophilia have increased bleeding with protease inhibitors including PREZCOBIX. The most common side effects of darunavir, one of the medicines in PREZCOBIX, include: • diarrhea • nausea • rash • headache • stomach area (abdominal) pain • vomiting Tell your healthcare provider if you have any side effect that bothers you or that does not go away. These are not all of the possible side effects of PREZCOBIX. For more information, ask your health care provider. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088. How should I store PREZCOBIX? • Store PREZCOBIX tablets at room temperature between 68°F to 77°F (20°C to 25°C). Keep PREZCOBIX and all medicines out of reach of children. General information about PREZCOBIX Medicines are sometimes prescribed for purposes other than those listed in a Patient Information leaflet. Do not use PREZCOBIX for a condition for which it was not prescribed. Do not give PREZCOBIX to other people, even if they have the same symptoms that you have. It may harm them. If you would like more information, talk with your healthcare provider. You can ask your healthcare provider or pharmacist for information about PREZCOBIX that is written for health professionals. For more information call 1-800-526-7736. What are the ingredients in PREZCOBIX? Active ingredients: darunavir and cobicistat Inactive ingredients: colloidal silicon dioxide, crospovidone, hypromellose, magnesium stearate, and silicified microcrystalline cellulose. The tablets are film-coated with a coating material containing iron oxide black, iron oxide red, polyethylene glycol, polyvinyl alcohol (partially hydrolyzed), talc, and titanium dioxide. Manufactured by: Janssen Ortho LLC, Gurabo, PR 00778 Manufactured for: Janssen Therapeutics, Division of Janssen Products, LP, Titusville NJ 08560 Issued: January 2015 © Janssen Pharmaceuticals, Inc. 2015 027415-150108
Summer Reboot June 5, which marks the anniversary of the CDC’s Morbidity and Mortality Weekly Report (MMWR) first published account related to AIDS in 1981, is National HIV/AIDS Long-Term Survivor Awareness Day. This year, Gay Men’s Health Crisis (GMHC) picked this day to relaunch its Buddy Program. The Buddy Program epitomizes the theme of this year’s National HIV/ AIDS Long-Term Survivor Awareness Day: “Every Survivor Counts.” In an AIDS-conscious world that focuses on “Getting to Zero,” that is reducing new infections and helping HIV-positive individuals link to and stay in care to work toward viral suppression, we might often forget the tens of thousands of individuals who have been struggling long-term, before antiretrovirals came of age in the mid-nineties or for ten years or more. Alongside staying on top of their physical health, they frequently need to Buddy with client during the early days of the epidemic address isolation, the mental health issues that come with AIDS survival, poverty, ageism, and renewing their life’s purpose. The Buddy Program, which pairs volunteers and clients living with HIV/AIDS, started in 1982 to provide services to those dying of AIDS-related causes, who were often stigmatized by healthcare professionals, abandoned by loved ones, and otherwise isolated. Buddies would help out with shopping for food and household items if the client was unable to complete these tasks, as well as accompany clients to medical appointments and the hospital, if needed. In 2005, as interest in the program waned and Ryan White Care Act funding was cut by Congress, the program ended. Now, GMHC has restarted the program to fill the gap in needs experienced by individuals living with HIV/AIDS. Additionally, GMHC has created a new website page focused on services for long-term survivors, offering everything from employment services to information on medication. Long-term survivor services are much needed. Though times have changed, long-term survivors continue to combat isolation, chronic disease-related stress, and an increased risk for depression, substance use, and suicidal thoughts. Some also report stigma from within the LGBT community and symptoms similar to those experiencing post-traumatic stress disorder (PTSD). “Long-term survivors have lived through the worst of the AIDS epidemic, and now in many ways feel forgotten,” says Jeff Rindler, GMHC’s Chief Program Officer, in a prepared release. “We are not only committed to making sure they are not forgotten, but also that they are honored and have access to services that meet their needs today.” Rindler will oversee a new committee dedicated to meeting the needs of long-term survivors, including the Buddy Program. For more information, visit www.gmhc.org.
166 Avenue of the Americas, in the SoHo neighborhood of Manhattan, has seen some big changes. God’s Love We Deliver recently unveiled its refurbished and expanded homebase. It is also graced with a new name: The Michael Kors Building at God’s Love We Deliver. Fashion designer Michael Kors has been a longtime supporter of hunger causes as well as God’s Love We Deliver for more than twenty years—as a volunteer on kitchen and delivery duty, as a financial contributor, and as an all-around ambassador in the press and on social media. Each July, he heads up “Michael Kors Volunteer Month,” enlisting a team of volunteers to help with the non-profit’s mission of preparing and delivering over 1.4 million nutritious, individually tailored meals to individuals living with sever illnesses like HIV in the greater metro New York City area. God’s Love We Deliver also provides nutrition counseling. All services are free of charge; none have a waiting list—indeed it never has had one. The expansion will allow God’s Love We Deliver to meet a growing demand. The expansion, which also includes the Anna Wintour Volunteer Center and the Joan Rivers Bakery, was made possible in part by a city grant of $8 million, private gifts, and more than $5 million from Michael Kors, who, in the past, has been honored for his service by the non-profit and three years ago joined its Board of Directors. The space has more than doubled in size, now boasting a 9,600-squarefoot eco-friendly kitchen, expanded delivery and pack-out area, an enclosed loading dock, and a rooftop garden for meal-bound herbs to be grown. “God’s Love We Deliver has been helping and healing our community for more than 30 years, bringing home-cooked meals to people who are ill and, in the process, turning strangers into neighbors,” said Michael Kors at the dedication ceremony. “They are a precious resource for so many people, and it’s a privilege to be able to help them grow and expand their vital mission.” Alongside God’s Love staff, donors, and volunteers, and supporters, Michael Kors, Anna Wintour, Melissa Rivers, and Mayor Bill de Blasio launched the new facility in a special ribbon-cutting and dedication ceremony, complete with performances by the ARC gospel choir. For more information, log on to: godslovewedeliver.org. Follow God’s Love on Facebook and follow them on Twitter @godslovenyc.
A&U • JULY 2015
photo by Dimitrios Kambouris/GLWD; photo courtesy GMHC
In the Kitchen with Kors
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(Jeffrey is also a gem.) Soft eclectic music plays throughout the lobby, sometimes reminiscent of a bygone era, tunes sung by Frank Sinatra, Dean Martin, and even Gloria Gaynor. Our room is attractive homey and its appointments, like crown moldings and pin spot mood lighting, are punctuated by Joan Miro-esque paintings that give the space a posh touch. After attending a DAP (Desert AIDS Project) fundraiser—they do such fabulous work there—the next day, in the late afternoon, we don our bathing suits and sit at the edge of the pool, where alluring Lana Turner and swim-gymnast Esther Williams once lounged. At once, we both kick our legs playfully splashing the water on each other. Ruby Comer: That’s about all the energy I have left, girl, after our challenging hike today up Mt. Jacinto. You usually describe yourself as “gender queer.” Tell me about that. Karen Anzoategui: I identify as both genders and my preferred gender pronoun is “they/them.” As you know, I don’t believe in labels. It’s too limiting. I mean, look, God is genderless. [Her cell rings. She puts it on mute.] You know, Karen, it’s beguiling how you merge both passions—art and social work. I want to share art as a tool in the process of transformation. [I clap generously.] Honey, tell me about your work at Bienestar. I worked with issues of discrimination and poverty. I worked in case management and housing placement for the homeless and was also an STD/HIV testing counselor. My clients were predominantly immigrants, transgender, long-term survivors, and newly diagnosed. I met HIV-positive immigrants and heard their stories of struggle, of being persecuted for being gay. [Karen looks off and ponders.] You know,
at one point, I was in a West Hollywood testing site just outside of the clubs. That time period was filled with such interesting characters and situations.… I’m sure it was. How long have you worked in this field and what are you currently doing? I’ve worked for nine years with the HIV community in many capacities, including, as I just mentioned, case management, social work, and prevention. This experience has equipped me with skills to use art as a pathway to success, as a tool for education. I’m currently conducting workshops in life skills. I also teach art classes. Tell me, have you lost anyone to this challenging disease? I have lost both friends and clients. It was tough when my clients passed. The last one was transgender and she was strong, someone who spoke her mind. [She pauses.] At one point, I sat in her apartment as the smell of diarrhea was in the air. When I assured her that this A&U • JULY 2015
Ruby illustration by Davidd Batalon; portrait by Pablo Aguilar
f you can pronounce Karen’s last name, you’ve earned your brownie points! Though I’ve known her for several years, Ms. Ruby still has problems. It’s Ahn-zohah-tay-gee and its origins are Basque. As a child, Karen, her two older brothers, and her mother shuffled to and from Argentina, Paraguay, and California, to escape her father’s violent temper. Karen eventually claimed Los Angeles her home. After earning a Bachelor of Theatre Arts from Loyola Marymount University, Karen worked with clients at Bienestar, a multilevel AIDS organization for the Latin community, where she realized that she could blend her art (playwright, performer, artist) with social activism! Karen describes herself as an “Artivist.” In 2013, she premiered her one-woman show, ¡Ser! (“Be” in English). Featuring live music, the personal narrative explores Karen’s strained relationship with her two homes, Los Angeles and Buenos Aires, in addition to her queerness and love affair with soccer. For her performance, she received five L.A. Weekly nominations, winning two. She hopes to tour the show, with her first appearance booked in October at MACLA in San Jose, California. Today, she’s putting finishing touches on her documentary, Catholic School Daze and hopes to do a solo show about that as well. Karen and I opt to have a “galpal” weekend and we retreat to Palm Springs. We plant our butts at the newly revamped Triada, which had been vacant for twenty years. Under the Marriott umbrella, this Spanish Hacienda has nearly sixty ravishing units. Formerly known as The Spanish Inn, an iconic “in-the-day” place for notables, it was built in 1939 and eventually purchased by actor Alan Ladd’s widow in his memory. Elizabeth Taylor and Howard Hughes had permanent residences here. When we check-in late Friday night, Lois on the front desk couldn’t have been more charming and accommodating
[painful] situation was temporary, her soul surfaced in her eyes and she glared at me. I knew the end was near, even though she kept fighting until her body could not take it any longer.
than what the client was telling me. I learned about myself by listening to others. They give me wisdom by sharing their stories. When you give, Ruby, you truly receive.
Makes me heartsick. [I take a healthy spoonful of Greek blueberry yogurt, which I ordered from room service, and put the deliciousness in my mouth. Gotta get my late afternoon protein fix.] Say, Karen, what made you choose public service? When I focused on myself the world looked dismal. I felt pain and struggle. With friends and colleagues who were HIV positive, I felt a bond. When I shared my energy with the HIV community I learned and grew. I didn’t focus on what was going wrong in their lives, but instead focused on what was right for them. They were role models for me, living testaments of survival. Working in social services can try your triggers. I had to work through my own judgments and show compassion. As I heal myself, I become stronger and better able to help others.
That’s what they tell me! [We laugh.] How did you first learn about the epidemic? It was when Magic Johnson publicly announced that he had AIDS. I became
and I would host the stand up comedy. I actually got to perform for Dita Von Teese. [She smiles.] It was quite a special contribution to the community. I’ve also hosted other events. What else triggered your activism? Injustices were happening all around me. I had to bring about a change. I cannot go on with life wearing blinders. My parents’ tumultuous relationship was very difficult and was damaging but it also gave me a need to tell my own story.
more aware while watching The Real World with Pedro Zamora, a Cuban living in San Francisco. I was raised partly by my Cuban godparents so I immediately related to Pedro. Through Pedro’s journey, HIV was humanized. I would watch how he would carry himself as he was degraded by others, misunderstood, and judged. I felt connected to his pain, though I couldn’t understand what it felt like to be infected. I connected with his desire to live. Ah, yes. I remember Pedro well. What a hero. I know you have been active in fundraising for AIDS.... Yes, I made a burlesque calendar in 2009 to benefit AIDS Healthcare Foundation. We would have burlesque shows in Hollywood with Rockabilly bands
And where does your story go from here? I look forward to conducting workshops, contributing to youth in universities and high schools, to empower their journey towards self-expression and personal growth. Karen has a busy month in July! On July 15, check out Karen as Daysi Cantu on the season three premiere of the Emmy-nominated East Los High Season 3 on Hulu. And on July 19, she will perform a monologue paying tribute to an artist whose life was lost, based on her social services work with HIV-positive clients, at “Art, AIDS, America: Celebrating Artists We Lost,” from 2–4:30 p.m. at the Renberg Theatre, LA LGBT Center, The Village at Ed Gould Plaza, McCadden Place, Los Angeles, California. Ruby Comer is an independent journalist from the Midwest who is happy to call Hollywood her home away from home. Reach her by e-mail at MsRubyComer@aol.com. A&U • JULY 2015
performance photo by Pablo Aguilar; hotel photo courtesy Triada Palm Springs
Was there a catharsis? The compassion I learned in social services deepened my understanding and acceptance of humanity and aided me as a writer. The work became part of a philosophy and I was able to use it as a tool of self-analysis and discovery. My clients taught me to listen deeply. It was more than any other training I could receive in school. I learned to get out of my own way and listen to what is truly going on [within the client] other
Top: Triada Palm Springs Bottom: Karen in performance
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Tests & Testimonies how do we move past judgment so we can talk about hiv prevention?
our test will become your testimony,” said Mr. Tyrese Gibson, as he stood on the grounds of Universal Studios, addressing his Facebook and YouTube followers to encourage them to not give up during their struggles. He encouraged his followers to pursue success because, with God, anything is possible. We all have struggles, and some of those struggles have to do with sex. But, for those of us who are faithful, how can our tests become our testimonies if we are never allowed to talk about sex in a factual, non-judgmental way? In many faith-based organizations, often “saints” are delusional on the subject of sex and have consciously decided to believe that church is a place where sex doesn’t exist. In reality, every member knows that sex does exist and many have grown to love the activity of sex. However, it’s a taboo conversation—most members feel like it’s a sin to talk about. As a Texan, I’ve had the privilege to worship in several denominations and am currently worshipping at Everlasting Praise Baptist Church. This past Sunday, I announced that SAAVED, the HIV/AIDS non-profit that I founded, would be hosting a Wellness Workshop, and when I said the word “SEX” you could literally hear people taking in a deep breath and tensing up as if I had just committed a crime. My pastor, Bishop C.R. Davis, Jr. had to elaborate to the congregation to become more informed about HIV: “Let’s get real about the subject; you all are having ‘sex’ and if you are not going to restrain from the activity as you should then at least have the sense to protect your life as you allow God to work on your soul.” In my observation, abstinence is found in all religious institutions, but, as an idea, it has been tainted by the reality that sex does exist outside of marriage and this is a subject that many believers do not want to face. For example, I was raised in a church where we, like many others, were taught “no sex before marriage.” However, when someone came up pregnant the woman had to apologize to the church and ask for their forgiveness for her mistake. I never thought this to be fair, especially when I was also taught that it takes
two to tango. In my opinion, abstinence is the driving force of the stereotypes and judgment leading to condemnation from others within the organization, who find fault in you when you have fallen from grace by failing to remain celibate. Thus, in your struggle to remain what the celebrant calls “pure,” you find yourself like the woman at the well; judged, confused, alone and with a past that others refuse to let go because they are hell-bent on keeping cultural traditions that, they claim, have caused you to leave a negative mark on society. Abstinence-only as a prevention method is popular outside of these faith-based institutions as well. For example, while the state of Texas ranks third in the country for the highest HIV infections, our lawmakers have found it beneficial to defund HIV prevention funds and voted to divert $3 million dollars into “abstinence-only” programs. Why would such an outrageous act take place in a region with a high rate of HIV infection? Not to mention that the Big State of Texas also ranks the fifth-highest in the country for teen pregnancy, with the highest rate of repeat teen pregnancies.The amendment was offered by Representative Stuart Spitzer, a Republican out of Kaufman, Texas. According to Texas Observer, Representative Spitzer said, “My goal is for everybody to be abstinent until they’re married.” The article also goes on to state: “his goal, he said, was for everyone to know that ‘abstinence is the best way to prevent HIV.’” I believe that Representative Stuart’s goals are like trying to pull an adult tooth out at home with strings instead of utilizing a professional dentist who is trained in using specific tools that are strictly designed for extractions. Yes, it is possible to pull a tooth out at home with string. However, it is painful and dangerous, with a high risk of the tooth breaking and getting infected. It’s destined to lead to more pain. This solution only allows the root of the problem to increase and spread throughout the mouth causing more problematic issues for the individual. In this case, the bad tooth is the abstinence-only program because Texans have clearly shown that the act of practicing abstinence does not work for them. The problem that I find with Rep.
Stuart’s goals are just like most denominations that desire and require a person to remain abstinent. However, this is a serious and likely-to-fail objective because once a person takes a bite of the forbidden fruit, and that fruit was emotionally and physically good to them, it is harder to resist any future sweet temptations. The need for abstinence-only programs forty years ago may have seemed “just.” However, today, promoting abstinence is like playing dodge ball with a high possibility of getting hit because we live in a society where even young people are sexually active and are enjoying the pleasures of life that comes along with it. To be honest, in the heat of the moment, a person is less likely to say “No,” particularly when they have already previously indulged in the act with someone they are attracted to. Nevertheless, chances may rank higher for the two to agree to use a condom rather than counting on resisting and walking away from what they truly want. Democratic Representative Sylvester Turner from Houston, Texas, responded to the amendment by stating, “My goal is for everyone to be HIV/AIDS free.” I agree, but all types of prevention and education need to be the starting point to adequately reach this goal. In this column, we will discuss all types of topics including sex, faith, family, and government surrounded by the issues of HIV/ AIDS. I invite you to write to me with your views, ask questions and give suggestions. The only requirement is that you respectfully be yourself. Ask your question(s) and/or tell your story and I will reply. Tyeshia Alston is a native of Dallas, Texas, and an HIV/AIDS activist, who “will go anywhere where people will listen.” She has done everything from travel to D.C. to speak with legislators about better healthcare access and how the disease has impacted communities to serving on panels for NMAC and other organizations and bringing her message to talk shows. In 2005 at the age of twenty-five, Alston was diagnosed with HIV and she has been on a mission since 2006 to educate people (especially our youth) about HIV/ AIDS. Visit www.saaved.org to learn more about her community-based work. Also, if you have any questions or comments please feel free to email Ms. Alston at email@example.com. A&U • JULY 2015
Red Flags of My Past & Future we all must delve into the link between trauma & hiv
illustration by Timothy J. Haines
y life has been marked by traumatic events—homelessness, molestation, discrimination, rape, domestic violence, and child abuse. However, I never actually thought about how past trauma “caused” my diagnosis by creating an environment of risk. Yes I was insecure, sexually confused, depressed, and feared abandonment, but I had overcome all of these things. I made the best of my past experiences and put them to good use helping others. I needed mental health therapy to work through it all, but I was on a path to recovery. I had no idea that my past was still a huge part of my decision-making process, because I thought I had overcome those obstacles. I was wrong. On February 10, 2015, the link between my past and my diagnosis hit me square in the face. I was forced to look back and understand it all. I was sitting at home, it was late, and my husband and children were asleep. I was awake because I wasn’t feeling well and my cough was keeping me from resting. My husband’s phone started to beep over and over, and I got tired of hearing it, so I picked it up to turn the ringer to silent mode. Upon picking it up I realized that it was his email, and I thought maybe it was his boss trying to get a hold of him. This was normal for him because he is a land surveyor, and when it rains he is called out (even in the middle of the night) to get water samples. So I opened his email, but what I saw was not a message from his boss. His email was loaded with messages from him to other men seeking sexual connections. I read and re-read the emails, going back and forth in disbelief. My husband of ten years had been secretly sleeping with men, several men, on countless occasions. I was shaking beyond belief. I was in such shock. I woke him up, and asked him for a divorce. He asked me why and I showed him his phone. He had no words, nothing. I didn’t know what to say or do. I felt alone trying to pick up the pieces and to figure out what just happened. After several days I realized that I had overlooked several red flags prior to and JULY 2015 • A&U
during our marriage. You see, before I started to date my husband I was his boss in the military. I remember in 2004 our Commanding Officer asking me to bring him in to talk, and then he disappeared for two weeks. When he returned, he simply explained to everyone that he had had a family emergency, but all was well. Later that year we started dating, and, in 2005, he moved in with me and my two daughters from a previous marriage. We were happy and in love, but looking back opened my eyes to things I had seen and had failed to respond or react to. I noticed that initially he never went to sleep with me, and he stayed up late on the computer. I found out that it was because he was on Craigslist looking at pictures of transgender individuals, planning meetings with men, transgenders, transvestites, and transsexual individuals. Then in 2007 I was diagnosed with HIV. Even after the diagnosis I failed to do anything about any of it. Even when I was pregnant with our first child, I found out I had an STD, and I still looked past it. He admitted, after I found out about the men, that he knew he was HIV-positive and knowingly gave it to me, along with several other things from his past that I did not know—but now I knew the truth about everything. How did I not see all of the signs and red flags? What kept me from making a sound decision? This is when I made the actual connection. The abuse in my childhood and adulthood had an effect on my HIV risk-taking behaviors. I was unable to see the signs because my complex traumatic experiences affected my ability to develop healthy relationships. My physical health, emotional response, behavior, cognition, and self-concept and future orientation were also greatly affected. I shut down entirely, or internalized feelings; when I was faced with stressful situations, I became depressed. I remained emotionally numbed to threats in my environment, which caused me to be vulnerable and victimized over and over again. Even though I didn’t trust my relationship with my husband, I felt powerless to
change the circumstances. I felt incompetent as a woman, destined to face negative situations for the rest of my life. I was damaged and hopeless. All of these complex traumatic effects are directly linked to me ultimately being diagnosed with HIV. So where do I go from here? First, I need to understand that trauma affects others in the same way it affected me. What people don’t know is that my husband faced similar traumatic childhood experiences, which affected his risky behaviors too. Just like me, he had limited ability to develop healthy relationships and make good life decisions. Can I judge him for his faults? Do I leave and abandon him when he has been struggling with the same issues I have? Can people change? These are questions that many people have asked me, and I am not sure I have that answer. I think we all have faced a different struggle and we all heal differently. We each need to figure out what that answer is for ourselves because only we know how to move forward and make that change. Both my husband and I are just starting this journey of recovery, but it is only the beginning. Heather Arculeo, a positive woman since 2007, works to educate, advocate, and empower others to make a change because “change is possible even if the transformation seems impossible.” She wants to continue to make a difference in the HIV community because she is not only a peer, a mother, a sister, a wife, an aunt, and a daughter, but also an example to other women living with HIV.
I have to get lab work done because I’m pregnant, and it is also a requirement to get an HIV test, but I’m scared to find out my status. I never had any signs of symptoms of HIV, and always fight off disease pretty good. But in my past I had unprotected sex with a couple of people. —Shakira (not the singer!) As a parent, I’ve always been very straightforward with my kid, even when he doesn’t like it. I’m also straightforward with those who write in. Why? Because we as a people must live in reality to move forward in the world. Your reality right now, Shakira, is that you are pregnant and you need to get all the blood tests, especially HIV, to make sure that you and your baby are and stay healthy. I know you are scared about what the result is going to be, but you cannot be scared about anything until you are certain that there is anything to be scared about. If you are HIV-positive, then the earlier you know you are the better off you will be. If not for yourself think of that beautiful life growing inside you; it lives because you live. And don’t try to self-diagnose
based on symptoms; some people who have HIV might not have any symptoms whatsoever and the disease might still be progressing toward an AIDS diagnosis. It’s better to get tested. By the way, National HIV Testing Day was on June 27, but any day is testing day. Take a trusted friend with you as you get tested; you are in a delicate stage in your life and need the support. Good luck! Justin—
Ok so right now I’m on no meds my T-cell count is 624 and load is 20,000. They gave me Complera but I’m scared to take it...did you experience really bad side effects? Three months ago my T-cell count was at 908 and viral load was 10,000...the changes in numbers scares me. Sorry if I’m rambling. I just wonder how long I can go without meds. Thanks for responding. —Darlene No worries. I’m on Complera right now. You have to at least try it to see if your body does well with it. If your T-cell count is dropping and you’re under advisement of a doctor then you should listen to your doctor and
see if it’s well worth taking Complera. (I don’t believe in holding anything back from my readers, so I am going to suggest you read up on it to learn about its full profile. You can start here: www.complera.com.) Complera is a great HIV medication that is fairly new. For me personally there are no side effects that I feel today. It was a lot easier with Complera because it is only one pill a day. I used to be on a three-pill regimen that included Norvir (one pill), Truvada (one pill), and Reyataz (one pill) and then I was put on a four-pill daily regimen which included Norvir (one pill), Truvada (one pill), and Prezista (two pills). Now, on Complera, my T-cell count has increased while my viral load is undetectable. You have to remember to take it with food and take it at the same time every single day. Everyone’s body that is infected with HIV deals with it differently. I cannot ethically tell you it’s okay to go off your HIV medication. I myself try not to miss my medication, though we all fall short sometimes. I really think you should talk to your doctor about your concerns and also going off your medication. I wouldn’t advise it, but you will do whatever you want to. Try not to worry—the more you worry the more stressed out you will become. Living with HIV, you have to make sure you try not to stress yourself out. The stress might affect your body in combination with taking a new medication. Write back and update me about what you decide. ◊
photo by Don Harris © Don Harris Photographics, LLC. all rights reserved
Justin B. Terry-Smith, MPH, has been fighting the good fight since 1999. He’s garnered recognition and awards for his work, but he’s more concerned about looking for new ways to transform society for the better than resting on his laurels. He started up in gay rights and HIV activism in 2005, published an HIV-themed children’s book, I Have A Secret (Creative House Press) in 2011, and created his own award-winning video blog called, “Justin’s HIV Journal”: justinshivjournal. blogspot.com. Presently, he is working toward his doctorate in public health. Visit his main Web site at www.justinbsmith.com. He welcomes your questions at firstname.lastname@example.org.
A&U • JULY 2015
by Norman Belanger
hat time is it?” He sighs, drowsy from a day at the beach. I move over so he can put down his bag. “The clock at Town Hall just rang 4,” I say. The stairs of the post office are filling up, in that hour just before naptime, when we usually meet. Groups of us park our bikes and lounge on the concrete steps in the center of Provincetown’s busy Commercial Street. It is the custom, in these pre-cellphone days of the Gay Nineties, to congregate at this place. In the sleepy afternoons of a late August, there we are on the steps, catching up and gossiping and occasionally meeting boys. The post office is the place to check in with your friends, cruise men, or make plans for the evening. Many relationships begin, and some end, there. This year we all are wearing madras, and flannel, baseball caps, cutoff shorts and banged-up combat boots, skintight T-shirts and Calvin Klein underwear. A gust of wind puffs off the bay and the sun hangs low, it’s in our eyes and burnishes our skin, we are golden and young this summer, we are louche and lithe. “I walked the dunes,” he says, collapsing next to me. His hair is tawny and smells like the sea. There is sand still on his sandaled feet. “I read all day,” I say. “You got a smoke?” he asks. “I am dying.” I hand him the half pack of Camels and a damp book of matches. It takes him four of five tries before he finally gets it lit. “Holy shit,” he says and laughs, exhaling smoke. We are silent a while, just looking and listening as the ocean of humanity goes by, up and down the ragtag street. It’s mesmerizing. There are the sounds of kids screaming, people laughing, music blaring off a boom box. Miss Ellie sings Dusty Springfield songs on the corner. Waiters across the way are already hawking tonight’s fish dinner. Out in the harbor, the Boston boat, just now pulling away from the pier, blasts its horn. We watch the parade of tourists, and drag queens, and boys, the endless tide of the summer people. “Breeders and bears on bicycles and twinks and damned New Yorkers,” says someone. He is of the gang of beautiful jaded townies that commands the center of the coveted stairs. “Fashion victims,” another says. “Check out that one,” a redhead nods, “he’s wearing overalls.” “I don’t think they were intended to cover all of that,” says an old Queen from his perch on the top stair. He has the look, the gaunt cheeks and yellow skin, though his sunken eyes still glint with gleeful malice. “Why do handsome guys always end up with troll boyfriends?” the redhead says. “Don’t despair,” says the Queen, “that just means there’s hope for you, dearie, maybe someday.” There’s more bitching and chat, and more comments on the passersby, it’s all mindless and silly and fun. We are like the gulls flocked and squawking out on the breakwater, making noise.
My friend laughs. “You going out tonight?” he asks me. I shrug. “Maybe I’ll make the usual rounds.” “See you at the Vault?” “Or A-House. It’s the disco dance-a-thon boxer brief party tonight upstairs at Macho Bar” “Fuckin’ A!” he says. He chucks the butt of his cigarette deftly into the sewer grate. “I’ll buy you a Rolling Rock,” he says, “if you’re good.” He makes a low growling sound, as he lugs up his beach bag. “OK tiger, time for me to get my beauty sleep.” “See you later, maybe,” I say. “Maybe,” he says. His eyes are brown, with flecks of penny copper. We both smile. We both stand there a while and smile, as if. As if I won’t be there in the old boat yard tonight, sometime after midnight. As if he won’t be there, looking for me. As if we both might not find each other there again, seemingly by accident. As if the moon won’t be full by some happy coincidence. As if we might not walk the damp shore of the bay. As if he won’t kiss me under the pier. We smile, as if. *** I still think of him, sometimes, now, years later, long after that summer, long after he is gone. I think of him, some of these breezy late season evenings, when I sit on a bench at Town Hall. They don’t let you hang out on the steps at the post office anymore. There are railings and signs now. So I sit here, under a battered straw hat, with reading glasses and two new hips. I am two decades older, a survivor of sorts, sole and alone, on the shore of a sandbar called Land’s End. I sit with the folks, and the ice cream eaters, and this year’s crop of kids. I listen to them talk mindlessly and carelessly like we used to. When I think of that past summer, sometimes I remember a sun setting over the dunes, and long shadows in the moors where blue herons rustled in tall grasses. I remember a handful of nights with a sky full of stars. I remember whole hours spent, just sitting around, looking at people, shooting the shit. I remember the smell of wet hair and sea salt, the rain and the fog. I remember his laugh. Just now the old bell tower chimes 4 at Town Hall. I wake from my dreamy dozing and my memories. I put my hat over my eyes, and listen to the street performers singing love songs. I listen to the ebb and flow of chatter as the parade goes by, the endless tide of the summer people. I listen, still half asleep, still smiling, as if. Norman Belanger has been living with HIV for nearly twenty years and works as a nurse in the HIV field. Of writing, he says, “It is an interesting time to witness in our history, both as a professional and on the other side of the stethoscope. However, I cannot forget what has brought us to this place, the efforts and the lives and the losses, as well as the victories. Writing has long been a creative outlet for me, and a way to channel the mix of emotions we experience as we navigate ever forward.” A&U • JULY 2015
5pm Hilton Chicago’s Grand Ballroom | 7:30pm Auditorium Theatre of Roosevelt University PERFORMANCES BY Giordano Dance Chicago, Hubbard Street Dance Chicago, Joffrey Ballet, River North Dance Chicago, Chicago Human Rhythm Project, Same Planet Different World, C5 presenting a world premiere, and choreographer Randy Duncan’s highly acclaimed work STAND BY ME with special music arrangement by Ira Antelis EMCEES Joey Bland and Tim Mason from “The Second City” BENEFICIARIES AIDS Foundation of Chicago and The Dancers’ Fund GALA LEVEL TICKETS $250-$600
PERFORMANCE LEVEL TICKETS $15-$75
www.DanceforLifeChicago.org | 312-922-5812 /DanceForLifeChicago
M E D IA PART NER S
PHOTOGRAPHY Sandro | DANCERS Joshua Blake Carter, Giordano Dance Chicago, Jessica Tong, Hubbard Street Dance Chicago, Derrick Agnoletti, Joffrey Ballet
Saturday, August 15, 2015
WE CAN BE
New York City’s Housing Works Joins Creative Forces With Social Media Mogul Jack Mackenroth & Celebrity Photographer Mike Ruiz To Rocket-Launch Their New Multimedia #PrEPHeroes Campaign by Sean Black, with Chael Needle
ranco stands strong, his taut forearms steeped in red while a pair of angelic wings protrudes from behind him as if ready to take flight and lead him to battle.
Peter radiates empowerment behind dark plumes, his hands plated with beveled guards while Charles grins with confidence, his cobalt-blue and blackened fingertips framing the potency of his satyr’s horns. Alex displays a gilded, regal strength, adorned in spikes of silver as his gaze lifts to the horizon and Mike confronts the viewer with courage, leather and painted skin stitching together toughness and vulnerability. United with Seth, Nathan, Alex Z., and Calvin, they are sheathed and poised for action in protective armor and inner resolve. They summon the courage, strength and dignity of Greek, Pagan, and Aztec gods. They are as fierce and beautiful as Tom Hardy’s Mad Max. Enter the dawn of the safer-sex warriors. They are a tribe of PrEP Heroes, banded together in the fight for HIV-conscious sexual health. Each of the nine Heroes in the newly launched, on-line social media campaign from Housing Works Community Healthcare is currently taking PrEP, the FDA-approved prevention agent indicated for individuals at risk for HIV infection through sexual exposure. Each is presented with a uniquely defining look to echo the diverse voices of the community. “For the art direction of the campaign, I was given the instructions by [Housing Works] SVP Andrew Greene: ‘I want twisted, edgy superhero looks,’” notes AIDS activist Jack Mackenroth [A&U, November 2010]. “So I brainstormed with stylist Nick Putvinksi
and sketched out looks for Top: Peter each guy. I didn’t want to Opposite page: Mike be literal with masks and capes so I used make-up and more of a Mad Max vibe for the costumes. They evolved into something incredible. Everyone who worked on the campaign is extremely talented and it all came together magically.” Shares Mackenroth: “The goal of the campaign is to portray these men as role models and as powerful individuals who are taking charge of their own defense against HIV. I love that they A&U • JULY 2015
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A&U Gallery are depicted as bold, visionary ‘heroes.’ They are seizing control of their own sexual health and protecting others by stopping further HIV transmission. I hope that the stylish and provocative nature of the campaign will inspire others to take a second look, share it on social media and instigate conversations about HIV prevention.” Renowned celebrity photographer Mike Ruiz helped bring the vision to life with his striking visual eye for exquisite imagery. Housing Works hopes that the campaign—which will surely leave its digital footprints across Twitter, Facebook, and gay dating and hookup apps, among other sites—will encourage gay and bi men who are HIV-negative to consider the benefits of PrEP as part of the prevention toolbox for serodiscordant couplings and sexual partners. “I think PrEP can revolutionize the epidemic—totally stop transmission,” continues Mackenroth. It’s been three years since Truvada as PrEP was approved in the U.S., and, since then, health departments in major cities like New York, San Francisco, and Los Angeles as well as numerous AIDS service organizations have introduced programs to make those at risk aware of the innovative prevention tool and to help them gain access to the once-a-day pill as part of a comprehensive approach to link individuals to testing, prevention education, and care. Although the PrEP Heroes campaign focuses on gay and bi men, the prevention tool has been shown to greatly reduce the risk of HIV infection among transgender women, heterosexual men and women, and injection drug users. Studies have shown a ninety-two percent to ninety-nine percent reduction in the risk of contracting HIV among those who are negative. “PrEP is a crucial component of New York State’s Blueprint to End the AIDS Epidemic, which has been endorsed by Governor Cuomo. We have seen tremendous progress and advances in research and medicine, but now we need to work to break down socioeconomic barriers and expand access so that all at-risk communities can benefit from HIV prevention tools like PrEP,” says Charles King, President and CEO of Housing Works. Prevention—along with frequent testing and linking individuals to and retaining them in care to suppress the virus to undetectable levels—is key to ending AIDS, but so is working against the systemic forces, like poverty and racism, that create an environment of risk. Sprung from the Housing Committee JULY 2015 • A&U
of ACT UP New York and founded on the simple premise that housing is the threshold step for improving the emotional and physical health of homeless people living with HIV and AIDS, regardless of disease progression, mental health issues or addiction, Housing Works fosters good health and positive social change through empowerment, innovation, and collaboration. Committed to health justice and advocacy, Housing Works provides essential, client-centered healthcare and support services for homeless and low-income New Yorkers living with and affected by HIV/AIDS. The grass-roots organization has also turned entrepreneurial expertise into a solid funding source, with its Housing Works Thrift Shops, Housing Works Bookstore Cafe and The Works Catering account. The non-profit currently provides services for over 5,500 clients annually across New York City. Activist Peter Staley [A&U, June 2015] recently blogged that Housing Works is “one of New York’s most impactful AIDS service organizations.” While the eye-popping campaign, with
Alex its otherworldly images, will surely catch the eye of gay and bi men, Housing Works knows that PrEP as a prevention practice is a little more down to earth. After all, the solid clinical data that supports the efficacy of PrEP means little if the prevention tool is not embraced by sexually active HIV-negative individuals as part of their daily routine. But the message the campaign is touting is crystal clear: We have what it takes to protect ourselves with PrEP. We can be heroes. For more information about the campaign, including digital social media resources and behind-the-scenes videos, visit www.prepheroes. org For more information about Housing Works, visit www.housingworks.org. Follow Housing Works Community Healthcare on Facebook/ HWCommunityHealthcare and Twitter. Chael Needle is Managing Editor of A&U. Sean Black is a Senior Editor of A&U.
PrEP-ing Up for t Activist and former NFL player Wade Davis speaks candidly about issues defining the AIDS epidemic in the South by Alina Oswald photos by Katie Simmons-Barth
he other morning I started my day with the usual cup of coffee, and also a phone call from none other than Wade Davis, former NFL player, and LGBT and AIDS activist. Yes, that Wade Davis, whose activism work has been featured in Ebony Magazine, The Washington Post, CNN, and NPR. A member of the Gay, Lesbian and Straight Education Network sport-advisory board, Wade Davis is also the executive director of You Can Play Project, an organization that fights homophobia in professional sports. This morning, he took time to speak candidly and passionately about causes he supports, such as fighting, and most importantly finding solutions to, the South’s AIDS epidemic. One doesn’t need to be a football fan or know anything about football for that matter, to appreciate the work Wade Davis has done on and off the playing field. What I found most exciting about chatting with him is that he’s a kind of celebrity very much connected to the real world. He’s also inspiring and engaging, a role model to follow every step of the way. This July, Davis joins the cast and “[his] good friend,” director and producer of Blackbird, Patrik-Ian Polk [A&U, October 2014], at the launch of PrEP Up Alabama, a two-day kick-off of the initiative organized by AIDS Alabama, whose mission is to prevent the transmission of HIV/AIDS statewide. PrEP Up Alabama will reach out to Black and Latino gay, bisexual, pansexual, or non-identifying males via social and digital media, as well as outdoor billboard and articles, to educate
in Shreveport, Louisiana. Over the years he has done a lot of work with African-American members of the LGBT community. “Part of my goal is to start a conversation to educate people to the fact that we are all living with HIV,” Wade Davis says. “Not that we
about accessing health and wellness options, such as PrEP as an HIV prevention tool. On July 25, the second day of PrEP Up Alabama launch, there will be a screening of Blackbird, a movie which tells the coming-of-age story of a young black gay man, followed by a Q&A session
From Left to Right: Jason Collins, Wade Davis, Darnell Moore, Tiq Milan, EJ Johnson, Patrik-Ian Polk
with the cast, and moderated by Davis. Another reason behind his decision to take on the fight against AIDS, in particular, AIDS in the South, is that Wade Davis is himself from the region. Born in Little Rock, Arkansas, he spent most of his childhood
are all HIV-positive, but there are people in our lives [that] we love and care about, [and who] are probably impacted by [the virus]. So, therefore, we all should [make it our] goal to be part of [ending] this epidemic.” Southern states like Alabama, Florida, A&U • JULY 2015
the Fight Georgia, Louisiana, Mississippi, Texas, Tennessee, and the Carolinas are disproportionally impacted by the epidemic for several reasons. They have higher levels of poverty than other regions, and also less access to healthcare and affordable transportation to and from places that could provide HIV/ AIDS treatment. Poverty, stigma, shame, and related silence intersect to create a setting for the epidemic, especially in the South. “That’s kind of the perfect storm to have an epidemic,” Davis says. He believes that one way to find a solution to the AIDS epidemic in the South, in particular, is to start a candid and educated conversation about it. It’s what he’s trying to do. “Because,” he says, “so many individuals who are HIV-positive are living in fear, and silence. And silence is a loud killer. We need to destigmatize what it means to be HIV-positive, what it means to be LGBT, but also to have a conversation [explaining] that HIV is not [specific] to the LGBT community. There are [straight] women [and also] straight men who are impacted by it.” It is also imperative to have this conversation in churches and schools, and educate people to the dangers of HIV, to how to protect themselves, for example, by taking PrEP. And while PrEP may not be for everybody, people need to know about it, and also have access to it. PrEP, or pre-exposure prophylaxis, represents a new HIV prevention method. In 2012, the FDA approved the antiretroviral drug, Truvada, as the first (and, so far, the only) drug individuals can take in order to prevent HIV infection. But not everyone knows about it, or can access it readily. While some health insurances cover the use of Truvada as PrEP, healthcare providers have the final say on who is more suitable to receive PrEP. While using Truvada as PrEP is still a novelty, data regarding favoring certain patients over others, based on ethnicity or race, is yet to fully emerge. To be
able to foretell possible disparities among individuals categorized by ethnicity and race in offering PrEP as HIV prevention, for now, one can only glance at available HIV treatment data, to get an idea. And at least one study has shown that many young gay and bisexual men of African descent are the least connected to care, compared to other gay men of different ethnicities. While it’s important that individuals educate themselves about HIV/AIDS treatment and prevention options, it is also important for them to trust their educators. But,
“I’m a person who deeply cares about this subject, so, hopefully, by bringing someone like myself, a former athlete, a Southerner, we can get people to understand that times are changing.”
JULY 2015 • A&U
historically, there is often distrust between the African-American community and the medical establishment. Hence, AIDS Alabama has asked Wade Davis to speak at PrEP Up Alabama, because the choice of educator can make a difference. The messenger is as important as the message. “I have been doing work in the community of color my entire life,” Davis says. “I’m a person who deeply cares about this subject, so, hopefully, by bringing someone like myself, a former athlete, a Southerner, we can get people to understand that times are changing. We are not there yet, but, at the very least, there are individuals in the community who can start a conversation about how to protect yourself. Because education is power.” Having that conversation, and education can help break down the shame, stigma and silence surrounding HIV/AIDS, continued on page 54
G N G I N V I OLOV IFEE L F I L
DANIEL FRANZESE LIVES LIFE IN ABUNDANCE AND SHARES HIS KNOWLEDGE ABOUT HIV TO KEEP HIS PEEPS SAFE by Dann Dulin
Photographed Exclusively for A&U by Sean Black
rips shuffle furniture. Electricians position the lights. The crew and staff are squeezed into tiny spaces surrounding the set, an entire house from the front yard to the back rooms. “Rolling!” announces an officious crewmember. Stillness. The director shouts, “Action.” This is Soundstage 2 at Santa Clarita Studios in Santa Clarita, California, thirty miles north of Los Angeles. Daniel Franzese is on 32
set filming a scene for the new ABC Family series, Recovery Road, portraying a recovering choreographer who’s lost his mojo. He’s the patriarch to the residents at Springtime Meadows, a rehab facility. There’s a few more takes and then lunch is announced. Entering the set, I find Daniel sitting on a couch gazing at his phone. After introductions, we head off to the commissary trailer where an array of fresh, delectable food awaits. “Are you hungry?” he asks. “Help yourself.” A&U • JULY 2015
It wasn’t until years later that grown men started to coming up to me on the street— some of them in tears—and thanking me for being a role model to them. Telling me I gave them comfort not only being young and gay but also being a big dude. It was then that I realized how much of an impact YOU had made on them. Meanwhile, I was still in the closet….I had the perfect opportunity in 2004 to let people know the REAL Daniel Franzese. Now in 2014—ten years later—looking back, it took YOU to teach me how to be proud of myself again….I had to remind myself that my parents named me Daniel because it means “God is my judge.” So, I’m not afraid anymore. Of Hollywood, the closet or mean girls. Thank you for that, Damian. His brave letter set Daniel on a new journey—“My HIV and AIDS ‘calling’…,” he explains. “I had to do it Big to raise awareness.” In March he tweeted: “I’m no longer in a place of ‘God, please help me.’ I’m in a place of ‘God, how can I help you?’” After the letter was published, Daniel’s friend and next-door neighbor, Ryan, who had recently been diagnosed with HIV, developed agoraphobia and his health was declining. To save Ryan, Daniel called Quinn Tivey, Elizabeth Taylor’s grandson, who’s actively involved in amfAR and
was on his way to one of the ETAF facilities. He invited Daniel to join him. There, Daniel met ETAF managing director, Joel Goldman, and subsequently was offered the position of Ambassador. “Before I even had the part of Eddie, there was this pull, this connection [to the HIV community],” he notes, taking a bite of roast chicken and adding, “I was just astounded by all the different things that were available to Ryan, and how Joel took time to meet Ryan one-on-one. Now he had great care.” Daniel learned more about HIV. Through GLAAD, he discovered that he was the only HIV character on television. There hadn’t been one on television in quite a long time. (Currently there’s an HIV-positive character on How To Get Away With Murder.) He also learned that antiretroviral drugs are no longer administered in a cocktail, but rather by as little as one pill a day. Daniel passed on these facts to Ryan. “Here’s this educated gay male actor, who’s playing an HIV-positive part that’s looking for information and finding out a lot of information for the first time. Then here’s another person who’s just had HIV for a year and he’s also learning things for the first time. Then I knew,” he stops and sighs, “that information was not getting out to those who needed to hear it. I was
Looking’s Frankie J. Alvarez and Franzese ETAF. Quinn provided Daniel a roadmap for Ryan’s care. Weeks later, Daniel was cast in the role of Eddie in Looking. It was serendipitous. The casting director was the same one who had “discovered” Daniel singing in a Florida gay bar and had cast him in his first film, Bully. Daniel excitedly called Quinn to tell him the good news. Quinn congratulated him and said he was in town and
angry. I had to do everything I could to use my voice so people could be informed. Whether it’d be on a large scale like an interview with A&U or something as a conversation with a bunch of guys at a bar. I haven’t been able to shut up.” Daniel has played his new part as Ambassador quite well. In April, he joined Joel, Joseph Drungil of AIDS United, Quinn Tivey, and others in Washington, D.C., for A&U • JULY 2015
photo by John P. Johnson/HBO
arrying copious portions of food, we settle at the end of a long cafeteria table, the room dotted with other hungry chatty cast and crew. Daniel is outfitted in a long loosely tied silk kimono-style robe, a grey shlubby tank top underneath, black sweatpants and slipper-sandals with grey rumpled socks, and donning a simple gold necklace. The six-foot-three inch actor doesn’t look much different than Eddie, the affable HIV-positive character he played on HBO’s Looking. Daniel appeared in Season Two, the final season, and bulldozed the part, giving the series a well-needed touchstone. Unfortunately, and surprisingly, the series was canceled several months ago. But perk up you die-hard fans. In the fall, he and the rest of the San Francisco gang will begin production on a Looking film. “It’s being written as we speak,” offers Daniel. Commenting on the correct pronunciation of his last name, Daniel asserts, “RuPaul taught me a great way to say it. ‘I don’t have my own air conditioner. I have to use my—friend’s AC.’” He beams that genuine hearty smile and we both giggle. Pronounced Fran-SAY-see, it summons up St. Francis of Assisi. Daniel was recently appointed Ambassador to the Elizabeth Taylor Foundation (ETAF). “I’ve taken a whole new perspective on the disease since my new position,” he remarks. “I feel a passion and responsibility towards this commitment. I’ve lost friends to AIDS and several friends are HIV-positive.” (The Looking finale party benefitted ETAF.) Flashback roughly one year ago when Daniel came out. It had been ten years since he was cast in his breakout role in Mean Girls with Lindsay Lohan and Rachel McAdams. He played high school student, Damian, “almost too gay to function,” as his best friend, Janis, described him. Post-Mean Girls, Daniel was boxed in. He wanted to play many kinds of roles, not just gay roles, but he was being typecast. Like Damian, he wanted the audience to laugh with him, not at him, and so he began to turn down roles. It became harder to pay the rent. Fed up with the situation, in April 2014, Daniel changed the course of his life when he publicly wrote a letter to his Mean Girls character, Damian, part of which is written below. ….Damian, you had ruined my life and I was really pissed at you. I became celibate for a year and a half. I didn’t go to any gay bars, have any flings and I lied to anyone who asked if I was gay. I even brought a girl to the ‘Mean Girls’ premiere and kissed her on the red carpet, making her my unwitting beard.
cayenne pinch of irritation. Tom Friden, CDC Director, addressed the issue stating that this town has a higher rate of HIV than “any country in sub-Saharan Africa. They’ve had more people infected with HIV through injection drug use than in all of New York City last year.” In small towns, there’s usually a stigma and residents don’t get tested or treated. Also, unlike big urban areas, there’s no funding, awareness, or services. “This Could Have Been Prevented With A Needle-Exchange Program!” bellows Daniel in majuscules. “That’s why we gave an award to New York Senator Jose Serrano, who was very instrumental in implementing a needle-exchange program. New York used to have fifty-one percent new infections, now it’s down to .3.” Sitting there, Daniel bears earmarks to the headstrong investigative Julia Roberts in Erin Brockovich on a crusade, through trial and error, to fight the good fight. Inquiring why he forges ahead with fervent motion, he replies sincerely, “I really don’t know how not to.” He presses on. “I’ve spent a lot of years being silent about issues that I care about because I was in the closet. I felt stigmatized just being a gay male actor in Hollywood. Some people don’t have a voice—children, animals—and I feel the need to speak up.
I can’t really shut up about things I really believe in now.” Daniel was born in Brooklyn and lived there until he was seven, when his family (he has two younger siblings) moved to Ft. Lauderdale. He’s extremely close to his family. In fact, one of his all time favorite activities is “laughing with my mom.” (Don’t miss his sidesplitting series, “Shit Italian Mom’s Say,” on YouTube, and other A&U • JULY 2015
photo courtesy D. Franzese
he encourages his friends to do so.) He has two beverages, iced tea and mango juice, and every so often pours a bit of mango juice into the iced tea. Daniel takes a sip and continues. “Witnessing how Capitol Hill works, I could see myself being a councilman or something—you know, addressing people, changing their minds, bringing tears to their eyes. Okay. I’ve got the gift of voice. That’s what I do for a living. I can engage and entertain while I get the message across.” He does that splendidly with “the big hairy dude” he affectionately calls his character Eddie on Looking. Daniel was Top: Daniel and boyfriend Joseph at D.C. Pride pleased with the way his characBottom: Quinn Tivey and Daniel on Capitol Hill ter was written. “Michael Lannan and Andrew Haigh depicted AIDSWatch, an annual constituent-based Eddie in a good light. They national HIV/AIDS advocacy event hosted showed him being pursued. He was healthy by ETAF. Hundreds of activists and people and happy and changing other people’s lives, living with AIDS meet with members of like working with the trans-kids. They didn’t Congress, educating them on the epidemic deal with any [usual HIV-positive victim] in the United States. Daniel met with several bullshit. Eddie was living in an unabashed members of Congress. “I was challenging and unapologetic life.” them,” he says bluntly. “I said, ‘You’re taking Several months ago, Daniel was a meetings all day for AIDSWatch. Why aren’t guest at the Texas Bear Roundup—a you wearing an AIDS ribbon? If this was bear convention—in Dallas. “When I 1994, you would be!’” appeared on The Doctors talking about Daniel’s time on Capitol Hill was revePrEP, Dr. Jorge [Jorge E. Rodriguez, latory. “I was moved to tears watching how a reoccurring guest] brought up the passionate and focused Elizabeth Taylor’s term, ‘a magnetic couple’—someone grandchildren were in carrying out what she who’s positive and someone who’s wanted,” he tenderly mentions in a sonorous negative—which is kind of beautiful. voice. “I was once in Barbara Boxer’s office, That stuck with me. Well, I met a and there was this older gentleman talking magnetic couple in Dallas. They were about how most of his money-earning years in tears telling me how much Eddie were spent on medications to keep himself and Agustín’s relationship had meant alive and in good shape which cost hundreds to them. One of the guys said, ‘I can’t of thousands of dollars.” tell you how many times I’ve had that “It’s really time that everybody reevalsame scare, with my partner, or men uate where we stand as a nation and the before him. This is the first time in world on this issue. We have the tools now a storyline that ended happily.’ Their to eradicate this disease by ninety-six peraccount moved me,” says Daniel comcent in our country and we’re just not using passionately, looking off briefly when them. That is so frustrating,” he declares, a tray is dropped on the floor that waving his knife in the air, gesturing with a causes a roaring clatter. The Texas couple dramatic sweep. “We need to talk about getrefers to an episode where Eddie cums on ting rid of these abstinence programs and Agustín’s eye and Agustín freaks out with bringing back needle-exchange programs AIDS anxiety. They finally talk it out and which work. Abstinence programs do not. it’s resolved. We…need…to…be…realistic.” He goes on. Out of the blue, Daniel, in an agitated “We need to figure how to lower the cost voice, cites the recent HIV epidemic in of these drugs, including PrEP, to make Austin, Indiana, a rural part of the state, them more accessible.” (Daniel admits if caused by needle sharing. “That has my he were single he would take PrEP and stomach turning,” he protests with a
numerous parodies, such as “Please Go Home!”). He’s especially fond of his Nana, so much so that she’s played bit parts in some of his films. Even if she can’t appear, his character mentions her name. This calls to mind Carol Burnett’s tugging at her ear at the end of each show as a nod to her grandmother. Incidentally, Carol Burnett is on the top of Daniel’s list of celebrities that he’d like to meet. He also admires Lucille Ball, Jackie Gleason, Sid Caesar, and Ernie Kovacs, and has culled from their talents. In high school, Daniel took Leadership and was a member of the Student Council. His high school offered a good STD education, as well. “I was a little couch potato so I watched everything from The Ryan White Story to the special episode of Designing Women and all those shows in the nineties, when HIV and AIDS was a big hot-button topic,” he says, whisking his beard. “I fell in love with Pedro [Zamora on MTV’s The Real World San Francisco] and cried watching Rent.” He pauses. “Beyond The Candelabra and The Normal Heart are great, but yesteryear stories. Liberace died of complications from AIDS but how and what was his journey at that time? Stories are being told today but we need to show everything to erase stigma and to get rid of some of these antiquated laws,” he argues vigorously. “We need to showcase more characters with HIV! When they were visible, it’s been proven that infections declined.” Finishing his lunch, Daniel crisscrosses one semi-hirsute arm over the other and gracefully leans into the table, fiercely concentrated. He has the right fusion of masculine and feminine that he could have his own brand of scented candle. “Look, everybody needs to get tested. I was shocked by some of the statistics I’ve been learning: every month, a thousand people between the ages of thirteen to twenty-four are newly infected.” He quivers, rocking his head back and forth. “I brought this up on The Doctors too. If you’re straight or in a committed relationship like I am [he’s been coupled for nearly a year], your responsibility isn’t over.” He ponders, while pouring more mango juice into his iced tea. “I would love a campaign called, ‘Check It!’ Everyone gets tested—no matter what. Married, straight, everybody gets tested just to prove that they got tested.” He’s on a roll. His dark browns aglow. “You’re more likely to catch HIV from a person who doesn’t know that they have it. In the JULY 2015 • A&U
gay community, many guys are relying on these app profiles [where they say they’re negative], but that’s just not enough to go on,” he urges, eyeing me dead on. Daniel was tested after his first sexual encounter at age nineteen with a girl. “I was scared, so the next day I got tested. It took a week to get the results!,” he exhales, recalling the angst, relating that he was twenty-one when he first had sex with a guy. When Daniel and his partner, Joseph Bradley Phillips, met at a NoHo [North Hollywood] Starbucks, they were both tested before they had sex. “We are very much in love. He’s adorable…,” coos Daniel softly, with a hint of pride. The couple eventually wants to have children, but
for now they own a Dorky (a Dachshund and a Yorkie) named Henry. As if on cue, an AD (assistant director) approaches. “Daniel, We’re back from lunch, and they’re ready for you on stage.” He removes his empty tray and helps himself to ice cream. Any remaining thoughts, I ask. Hastily downing his last nibbles of ice cream, Daniel succinctly responds, in an adamant tone, “Anybody that needs me to speak about the epidemic, I am offering my services to your readers. If I don’t know what to say, I’m one phone call away from a person who does. Let’s Talk About It.” Dann Dulin, Senior Editor of A&U, interviewed actor Jay Ellis for the May coverstory.
Finding doctors who understand and prescribe Truvada as a prevention tool can take work by Larry Buhl
In an e-mail statement to A&U, Ryan McKeel, a spokesperson for Gilead, suggests that no doctors are left out of its educational program for PrEP: “We support multiple educational efforts to increase both awareness of PrEP and quality of PrEP delivery, including direct mailing of educational materials to healthcare providers (HCPs) and support for PrEP-related continuing medical education courses. Our educational efforts are aimed at primary care providers as well as at HIV treating clinicians. We have a field-based staff of medical scientists who provide education to healthcare providers across the country upon request.” Mckeel said Gilead also provides grants to community organizations that are raising awareness among at-risk populations about the availability of PrEP. But infectious disease specialists tell A&U that, for general practice doctors, the information that Gilead provides on PrEP is opt-in. And PrEP specialists that have
worked with Gilead tell A&U that they face resistance from some physicians, who either don’t want to learn about PrEP or are opposed to it because they think it will lead to riskier sexual behavior. Finding a doctor who can prescribe PrEP, and, importantly, offer follow-up services that go with it, is not a big obstacle for at-risk people who live near active and well-staffed STD clinics. But the lack of physician knowledge about PrEP nationwide puts people who live in smaller towns at a disadvantage, according to Gretchen Weiss, senior program analyst for HIV/STI/HCV at the National Association of City and County Health Officials. “You don’t need every physician in town to know about PrEP, but it’s critical to have at least one or two [who understand it],” Weiss tells A&U. Weiss says that in most cases it’s up to county health departments to identify providers in a region who might be willing to offer PrEP services, and develop referral A&U • JULY 2015
illustration by Timothy J. Haines
ruvada as PrEP has been the biggest breakthrough in the fight against HIV/ AIDS since antiretroviral therapy, yet its maker, Gilead Sciences Inc., launched a slow and quiet rollout of the drug in its use to prevent transmission of HIV. Truvada has been used since 2004 for people with HIV and was expanded in 2012 as a pre-exposure prophylaxis, or PrEP. Truvada interferes with the reverse transcriptase protein used by HIV-infected cells to make copies of the virus. The drug can prevent infections over ninety percent of the time if taken daily. A study conducted by Stanford University in 2010 predicted that just 20 percent of men who have sex with men (MSMs) took Truvada daily, there would be nearly 63,000 fewer infections in twenty years. With such potential to make a dramatic reduction in new infections in sexually active HIV-negative gay men, one could assume the PrEP regimen would arrive with great fanfare. But Gilead’s rollout did not include promoting the drug to the general public or even to primary care doctors. Instead, the drug maker has been paying to train HIV specialists in more than fifty community organizations around the U.S. Those specialists have been doing the outreach to general practice physicians. And with the U.S. Centers for Disease Control waiting to provide Truvada guidelines to providers in 2014, two years after it was approved to prevent HIV transmission, a lot of doctors around the country have been scrambling to catch up to PrEP, if they care to learn about it at all. The result has been a slow-growing awareness, and oftentimes it’s the patients that know more than their physicians.
lists and, if there’s enough staff, educate the individual doctors on what’s required for PrEP. “That’s not my sandbox.” It’s not just Gilead’s unique educational rollout that has made for a slower PrEP rollout nationwide. A big roadblock to PrEP access for atrisk patients in much of the country is that too few general practitioners think HIV prevention is in their wheelhouse. Using PrEP to prevent HIV infection requires more than just a prescription for Truvada. Infectious disease specialists understand that the regimen requires strict adherence, plus an HIV re-test every three months. PrEP specialists say counseling patients on how to use Truvada as part of an overall harm reduction strategy is important too. But many general practitioners are unwilling or unable to provide those “wraparound” services, if they are willing to consider prescribing Truvada at all. Jim Pickett, director of prevention advocacy and gay men’s health at the AIDS Foundation of Chicago, sees a Catch-22 for people who might be good candidates for PrEP in many parts of the country. “Many general practitioners will say, ‘that’s not my sandbox’ when a patient asks about PrEP,” Pickett tells A&U. “So they’ll refer the patient to an infectious disease specialist. But that specialist, who may know about PrEP but isn’t used to seeing HIV-negative patients, will send that patient right back to the G.P.” Pickett adds that the challenges to finding PrEP services in smaller cities are not unlike some of the roadblocks that make HIV services in general harder to come by. “Patients can access PrEP services, but they’ll probably have to travel.” First stop: STD clinic Until and unless a critical mass of doctors across the country understand PrEP, it’s up to patients and advocates to spread the word. PrEP Facts, a Facebook group with more than 5,000 members, keeps lists of doctors in major cities known to prescribe the drug. Candi Crause, director of infectious diseases for the Champaign-Urbana Public Health District in Illinois, started the educational effort in her area with the established HIV specialty clinic in town before moving on to doctors they’ve had a relationship with. But it’s taken some work to convince doctors about the efficacy of PrEP. “Some doctors have told us they don’t JULY 2015 • A&U
want to prescribe it because patients will stop using condoms, and maybe cause drug-resistant HIV to spread,” Crause tells A&U. Jeff Kemp-Rinderle, a program coordinator who works with Crause, says he was surprised by many general physicians’ lack of knowledge and understanding. “One doctor had to Google ‘PrEP’ right in front of me,” he says. “We didn’t expect the education rollout effort to be so hands-on.” Some infectious disease specialists say that, if it’s nearby, an HIV clinic might be the best place to receive PrEP, especially if they offer wraparound services that are crucial to drug adherence. But right now only a few clinics in the country have the money for a dedicated PrEP coordinator. The Red Door Services, of the Hennepin County Public Health Clinic is the largest and oldest HIV/STD services center in Minnesota. Paula Nelson, the clinic’s operations manager, tells A&U that the demand for PrEP has exceeded their expectations. “Right now instead of sixty clients we have more than 200 active on PrEP,” Nelson tells A&U. Nelson says that, even though more general practitioners are learning about PrEP, a full-service STD clinic is often the best place for PrEP services. Nelson adds that counselors take clients through an extensive intake and screening process to help understand how PrEP might fit into their sexual lives and their risk reduction strategy. “The services we offer for sexual health in general are not a good fit for primary care practices.” Come for PrEP, stay for healthcare After its approval for use in preventing HIV transmission, some of Truvada’s detractors called it a “gateway drug” to sex without condoms, suggesting that the drug would make those who could afford to take it risky and careless and, possibly, leave themselves at risk of other STDs. Gilead admits that the drug is not 100-percent effective, and still advocates using condoms even while on the drug. But some infectious disease specialists are seeing the drug as a different gateway—a gateway to healthcare in general for young MSMs who may not have insurance and may not have seen a doctor in years. Kemp-Rinderle says that, when a client comes through the door for PrEP he will not only get an HIV test, and re-test every three months if he qualifies for the pro-
gram, but also a chance to be vaccinated for HPV, even a flu shot. “They’ll get a whole prevention management schedule that they might not have accessed on their own. We even have staff benefit counselors who can sign them up for Medicaid if they need it.” Javier Boucher, a client intake coordinator at Red Door, tells A&U he has seen a positive, but unintended consequence of offering PrEP. “We found new patients who wanted PrEP, but hadn’t been tested yet. We’ve seen about five positive patients out of ninety in six months. So even though they’re not eligible for PrEP, those are patients who wouldn’t have come in otherwise and they wouldn’t have learned their status.” Boucher says they don’t do a lot of advertising about PrEP. Some of the outreach is done on MSM-specific profiles on apps like Grindr and Jacked and hookup sites like Adam4Adam and they’ve put some small ads in the local LGBT paper. “It helps that people already know about our clinic,” Boucher says. “So if they’re not coming in just for PrEP, we can tell them about it when they come in for [STD] testing.” Paying for Truvada Another potential roadblock to PrEP services is cost. Truvada is covered by insurers, but often comes with high copayments—sometimes hundreds of dollars a month—that can make or break most patients’ ability to stay with the program. Gilead’s assistance program offers as much as $300 a month, which can be very helpful. And some doctors have a sliding scale for services, but many do not. For those who lack insurance but want it, living in a Medicaid expansion state means customers will often find greater insurance subsidies than those living in other states. Pickett says that in Chicago where he works, a lot of young men show up wanting PrEP, but they have no insurance coverage. Fortunately Illinois is an expansion state, so our first step is to get them insured or on Medicaid.” “Before PrEP, not many young guys got health insurance,” Pickett says, and adds that for that reason alone, Truvada and the services around PrEP have been invaluable for many. And it’s just a matter of time, he says, before a larger pool of doctors nationwide understand and prescribe PrEP to patients who ask about it. Larry Buhl wrote about the HIV crisis in Indiana for the June issue.
What the Patients Ordered
A Dedicated HIV Doctor Opens up About the Job He Loves and How He Faced One of the Most Difficult Decisions of His Life by Chip Alfred photos by Lorelei Narvaja
hen we talk about HIV/ AIDS, we focus a lot of our attention—and rightly so—on the experiences of people living with HIV and AIDS. But what about the healthcare providers who treat people living with HIV? What motivates them? What sacrifices do they make? I sat down with one of them, Dr. Joseph Metmowlee Garland, an HIV specialist at Philadelphia FIGHT, for an in-depth conversation about his passions, his patients, and what he might imagine in a perfect world. When I first met Joe Garland, thirty-seven, with his Ivy League pedigree and understated charm, he came across as soft-spoken and professional. But after spending some time with him, I saw a selfless, unassuming man who lives to care for others. “Joe is a superb clinician with both the temperament and intellect to care effectively for the most challenging HIV-infected patients,” says Dr. Karam Mounzer, FIGHT’s medical director. “He is very compassionate, incredibly conscientious, and a true humanist. He always goes the extra mile to make sure his patients are connected to whatever they need.” The son of Tony, an American-born small-town New England physician, and Noi, a pharmacist and immigrant from Thailand, Garland dreamed about following in his father’s footsteps. “The model of medicine that I grew up with was my dad with his square country doctor glasses and the doctor’s bag going on house calls and being a pillar of the community,” he reflects. “I always thought I wanted to be a doctor when I was young, but my mom fought actively against it. Dad worked very
hard, and was on call all the time. She worried about that life for me.” Garland put thoughts of a career in medicine aside until after he graduated from Harvard. “That’s when I realized this is what I really wanted to do.” His interest in medicine was spawned by his desire to work with immigrant populations, which led him to pursue a specialty in infectious diseases. “I was interested in HIV,” he tells A&U, “especially because of the way it affects marginalized populations both in this country and abroad.” He graduated from Harvard Medical School, then moved to Philadelphia for his residency at University of Pennsylvania. Garland did a rotation at Philadelphia FIGHT’s HIV clinic, the Jonathan Lax Treatment Center, and decided that was where he wanted to work. He started as a staff physician in 2010, and hoped to spend the rest of his career there. Garland was drawn to the community-based setting and the breadth of resources available at FIGHT. “You can see just how well patients facing seemingly insurmountable odds can do when they have a good support system,” he says, citing as an example the case of a female patient he saw several years ago. She was homeless, newly diagnosed with HIV, and struggling with mental illness and addiction. “By the time she left our office, she had been connected to our substance abuse program and to one of our mental health providers,” he recalls. “She met with a case manager to help sort out insurance, and also found an emergency place to sleep that night.” With the assistance of the on-site pharmacist, the patient was able to start on medications that day.
“The better you know people, the more it becomes a partnership working toward a common goal. Being a doctor gets more and more enjoyable the longer you are seeing your patients,” Garland asserts. “The reason I love medicine is the relationships you build over time with your patients.” Earlier this year, Garland had to make a difficult choice between his relationships with his patients and the most important relationship in his life—his marriage to Philip, his partner for fourteen years. When Philip, a cardiologist, was offered a position at Rhode Island Hospital, the teaching hospital of Brown University’s medical school, Garland had to do some serious soul-searching, asking himself the question, “How much do I love my job and how much do I love my husband?” Of course the answer was clear. The couple had spent five years on different continents while Philip studied at Oxford, and neither of them wanted to be apart again. Brown offered Garland a position as well, as Principle Investigator of Brown’s Ryan White grant, and working in their HIV A&U • JULY 2015
clinic, which serves a diverse population, doctor to show such concern and considerincluding many uninsured, underinsured, ation not only physically but emotionally for and low-income patients. “I want to care his patients.” for a population that needs assistance and Despite having “such a heavy heart” where I feel my skills are useful,” Garland about leaving his patients at FIGHT, Garaffirms. “It makes me feel like the work land looks forward to continuing his work that I do matters.” with marginalized His work does populations and matter to his pabuilding bonds tients. He shares with a new group the story of one of patients. In his of his patients, an new role, Garland ex-offender, getting will also be working choked up after a visit with the medical with the doctor and school’s global a case manager. “I health program never thought when and hopes to carry I was in prison or the on his work caring halfway house that I for immigrant would ever get treated populations. For this kindly again,” the the last eight years patient admits. Anoththe busy, bilingual er patient wrote the physician has voldoctor an unsolicited unteered his time letter of recommendaone night a week tion when he learned at Puentas de Salud about Garland’s (Bridges of Health), impending departure. a neighborhood “In all the times I clinic serving South Karam Mounzer, MD, FIGHT’s Medical have gone to see Dr. Philadelphia’s Director, and Joe at Philadelphia’s first-ever Latino immigrant Joseph Garland he End AIDS Conference on June 8, 2015. has taken the time to community. listen to my concerns As to Garand to include me in land’s hopes for the decisions affecting my treatment,” the people living with HIV, at the top of his patient wrote. “Today it is indeed rare for a wish list is finding a cure. “I firmly beJULY 2015 • A&U
lieve we will have one. I always joke with my patients that I’m hoping I will be out of a job soon,” he says with a smile. “I’m not all that worried. There are plenty of other things doctors can and should do.” Until that day comes, Garland stresses the importance of fighting the biggest obstacle in the battle against HIV—stigma. “The way we must address much of the stigma and discrimination in this country is by people knowing people who suffer discrimination, understanding their stories, and seeing their humanity,” he remarks. “If we stop blaming the individual and start looking at the problems that can be associated with HIV as problems of our society, then we might actually shift the national conversation.” In the meantime, this devoted doctor will keep on doing what he does best— taking care of the people who need him most. “I like the idea of establishing a role in patients’ lives and being able to carry that forward for many years, hopefully for the rest of a lifetime.” For more information about the Philadelphia FIGHT Community Health Centers, visit www.fight.org. For more details about the Division of Infectious Diseases at Rhode Island Hospital, log on to www.rhodeislandhospital.org. Chip Alfred, A&U’s Editor at Large, is the Director of Development and Communications at Philadelphia FIGHT.
Matters of Survival what do we know about aids-related OIs and survival?
Finding data about OIs Researchers reviewed HIV surveillance data of adult patients with AIDS in San Francisco who were diagnosed with one or more AIDS-OIs, estimating the probability of survival after first diagnosis of an OI. But one of the challenges researchers in general face when studying OIs over the timespan of the epidemic is data collection. Says one of the study’s coauthor’s Sandra Schwarcz, MD, MPH, senior HIV epidemiologist at the San Francisco Department of Public Health, OI data collection in San Francisco is population-based and OI-specific, and these provide key advantages if you want to analyze OI-related survival information. Two factors of surveillance methods have stymied data collection of AIDS-OIs. First, the definition of AIDS has backgrounded AIDS-OI information. In
1993, the method of AIDS diagnosis changed. In the early days, the definition of AIDS was dependent solely on the occurrence of an OI; in 1993, the definition was changed to include low CD4 cells, says Dr. Schwarcz. This change took into consideration that fact that a drop in a patient’s CD4 cells usually precedes but does not automatically determine the development of an OI. Obviously, this marker helped physicians and patients address OIs before the fact rather than after the fact, knowledge of which could effect better health outcomes. So, before 1993, the reporting of an AIDS case meant the reporting of an OI, typically the first OI. After 1993, AIDS cases were reported primarily because of low CD4 cells. OIs that developed among persons who were already reported with AIDS because of low CD4 cells were not captured in the surveillance systems, says Dr. Schwarcz. In San Francisco, however, information about the development of OIs was collected as part of routine follow-up of all persons reported to the surveillance system, setting the city apart from most if not all other sites reporting AIDS cases. Second, the data that have been collected about AIDS-OIs are frequently culled from cohort-based studies, another primary source of AIDS data collection alongside health department surveillance. However, data collection from a clinic-based cohort study, explains Dr. Schwarcz, has built-in limitations. For example, she notes, “it includes people who (1) attend the clinic; (2) volunteer to be in that study and to consent, and (3) continue in that study. So there can be biases associated with that. Some people want to be in the study; some
Sandra Schwarcz, MD, MPH
people don’t. And there can be differences in the characteristics of those individuals, so that within a clinical study such as a clinic cohort the data may not actually be representative of the entire population.” And while population-based surveillance will always be limited to its locality, a city like San Francisco can provide a window on the national HIV epidemic, notes Dr. Schwarcz. However, in San Francisco HIV/AIDS primarily affects men who have sex with men and, as a result, certain OIs, such as Kaposi’s sarcoma [KS], are more frequent than one would expect from other parts of the country where populations such as persons who inject drugs are more common. Another advantage of analyzing San Francisco data is its comprehensiveness. San Francisco surveillance follows individuals diagnosed with HIV and/or an AIDS-OI throughout care, and thus can bring to light data about subsequent OIs in addition to the first OI. In addition, San Francisco collects information on HIV treatment Dr. Schwarcz points out, creating a fuller representation of the impact of treatment on mortality. A closer look at OIs The impetus of the study, says Dr. A&U • JULY 2015
photo courtesy S. Schwarcz
s better HIV treatment related to improved survival after an individual is diagnosed with an AIDS-defining opportunistic illness (AIDS-OI)? That was one of the central questions of a recent research study, whose results were published in a recent issue of The Journal of Infectious Diseases (“Mortality Risk After AIDS-Defining Opportunistic Illness Among HIV-Infected Persons—San Francisco, 1981–2012,” by Djawe et al). The short answer? Yes, in general. But while the short answer may satisfy those who only keep their eye on big-picture trends, it arguably means little to those individuals who are living with HIV and AIDS now and who need to make informed decisions about treatment and care. They deserve long, complex answers. The researchers of this study have given them one, a long, complex answer focused not only on survival and OIs but also on how different OIs have different challenges. Even as prophylaxis and/or antiretroviral therapy prevent the development of OIs and reduce the risk of mortality, AIDS is not over. Even in the current treatment landscape, OIs still cause death. The upshot? We need to commit to finding and fine-tuning better prevention and treatment strategies for AIDS-OIs.
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Schwarcz, evolved out of an earlier analysis she and others conducted based on the San Francisco Department of Public Health, HIV/AIDS Surveillance and Epidemiology’s AIDS case registry. “We looked at the incidence, that is the rate of new occurrences, of opportunistic illnesses both in initial, meaning the patient had their first opportunistic illness, as well as subsequent, meaning someone had an opportunistic illness, recovered from that illness, and then developed another one.” That study found a significant reduction in incidence rates for the eight most frequently reported AIDS-OIs from 1993 through 2008, qualitatively affirming that combination ART and increased CD4 cell counts offer protection against AIDS-OIs.. So the question of mortality in the context of declining AIDSOIs was one issue that deserved further exploration. “It’s very clear that treatment for HIV infection has had a dramatic effect on survival, as well as a dramatic effect on comorbidities associated with HIV infection, and prominently opportunistic illnesses. That’s pretty well established—and that is fabulous,” notes Dr. Schwarcz. However, attention to OIs, particularly their relation to mortality has somewhat waned as a topic of research, and this provided a jumping-off point for the new study. In this study, mortality risk was reviewed across three time periods over thirty years: 1981–1986, 1987–1996, 1997–2012. Researchers found that the most recent era, when combination antiretroviral therapies became available and widely accessible, sharply contrasts with previous eras. The probability of survival of at least five years after an initial OI diagnosis was significantly higher by leaps and bounds in the 1997–2012 period compared with 1981-1986, prior to effective medication: A seven percent chance of survival in the pre-ART era leapt to eighteen percent in the mono/ dual-ART era (which had the highest annual number of diagnoses of all eras), and then bounded up to sixty-five percent in the combination ART era. Across these three eras, the mortality rate of patients with AIDS-OIs who died by the end of observation (17,099 of the 20, 858 patients analyzed) was 98.4, 89.2, and 41.9 percent, respectively. Information about different AIDSOIs was also teased out. For the entire timespan of the study, the ten AIDS-OIs that were most frequently diagnosed, from most to least, were pneumocystis pneu-
monia (PCP), KS, HIV wasting syndrome, esophageal candidiasis, Mycobacterium avium complex (MAC), HIV encephalopathy, extrapulmonary cryptococcosis, chronic cryptosporidiosis, immunoblastic lymphoma, and cytomegalovirus disease other than retinitis. The bottom five included invasive cervical cancer, recurrent Salmonella septicemia, disseminated coccidioidomycosis, chronic isosporiasis, and disseminated histoplasmosis. Survival rates by specific OIs differed from one another although survival improved for each of these OIs in most recent time period compared to earlier years. For some OIs, like MAC and immunoblastic lymphoma, the median
Surveillance means survival The study authors note that there is room for improvement when you consider there is a thirty-five percent mortality rate within five years of the initial AIDS-defining OI in the current treatment era. In response to a question about whether or not research into OI-specific treatments and/or prophylaxis is needed, Dr. Schwarcz responded: “If those could be identified those could be extremely beneficial. And certainly that was seen with prophylaxis against pneumocystis pneumonia, where that prophylaxis was really beneficial. In fact if you look at the trends in death you can see that before we even had good antiretroviral therapy— meaning, highly effective—the deaths in San Francisco plateaued between ’92 and ’94...and that’s attributed to PCP prophylaxis. [You could really see] it had a marked impact on death.” The study authors noted that individuals with a first AIDS-OI diagnosed in the combination therapy era were more likely to die if they were not prescribed PCP or MAC prophylaxis, or antiretroviral therapy. Other factors influencing survival—such as injection drug use and access to healthcare—were also discussed. Alongside bringing to light new areas of needed research, Dr. Schwarcz believes the study results will hopefully alert clinicians to be be more aware of opportunistic illnesses when treating individuals living with HIV/AIDS. She also points out that early diagnosis, early treatment, and adherence to medications are all standard-of-care strategies that generally confer the best survival benefit. Funding surveillance could be addressed as well. Notes Dr. Schwarcz: “Conducting surveillance costs money. And it’s tax dollars. And it’s really important I think for individuals to recognize the value of conducting surveillance. It’s a good use, I believe, of taxpayer dollars and it’s something that needs to continue to be supported if we’re going to be able to continue to have these sorts of data, that are really important. Lots of people don’t recognize that it’s critical, and, like everything else, it costs money.”
“Survival rates by specific OIs differed from one another although survival improved for each of these OIs in most recent time period....”
survival was less than five years even in the combination therapy era. Survival was markedly better for other OIs such as PCP, KS, and cryptosporidiosis all of which had median survival of greater than fifteen years. Compare this with the median survival time in the previous eras—less than five years—and you can see the progress. Note however that, even as the number of OIs have declined the same OIs’ ranking by frequency of diagnosis has not changed significantly since 1981. The numbers also show that many patients in the combination therapy era were prescribed combination therapy as well as prophylaxis against PCP and MAC. But changes across the board were not uniform. Compared to PCP, and after adjusting for age, transmission category, CD4 cell count, use of any ART, and prophylaxis against MAC and PCP, progressive multifocal leukoencephalopathy (PML) and brain lymphomas, as well as persons with multiple OIs had worse mortality while the highest survival was observed among patients with KS and chronic cryptosporidiosis. The authors noted, too, that San Francisco survival rates might be higher than other places around the country because of programs that help patients enter and remain in care.
Chael Needle wrote about Man Up Mondays in the June issue of A&U. A&U • JULY 2015
Photo : Stéphane Turcot
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ated $1.71 billion from the sales of its HIV medications. Qura Therapeutics will be a separate entity from ViiV. Representatives of the UNC/GSK initiative state that it will focus on, among other strategies, what has become known as “shock and kill.” The “shock and kill” approach is a potential strategy where researchers hope to reactivate latent HIV that would then allow for the infected cells to be destroyed. This method will also be
studied at the amfAR HIV Cure Center and is a current focus of the International AIDS Society’s Towards an HIV Cure initiative, and several other researchers and institutions including Dr. David Margolis. Viral reservoirs are clearly a vital aspect to curing HIV. Much is still unknown regarding these reservoirs where HIV lies dormant and unable to be reached by the currently used HIV drugs. However, the “shock and kill” strategy appears to already be a heavy focus of many existing universities and projects. Hopefully this new endeavor by UNC/GSK will use its funding to look in other directions, specifically others that do not involve HDAC inhibitors, which have shown, thus far, to not be the key we need to move forward in cure research, as was initially hypothesized. According to a GSK representative, the collaboration may be open to working with other researchers and companies. However it is unclear what that type of collaboration would look like. There is a vast amount of ongoing HIV cure research underway. For example,
a company named Arno Therapeutics, which is developing drugs to fight cancer, has found that one of its cancer drugs may hold potential in halting the replication cycle of viruses, like HIV. By affecting chaperone proteins, a newly discovered host-targeted means of fighting viruses, the virus is unable to properly produce copies of itself. In a distinctively different approach, a professor at the University of Rochester has found a means of possibly eliminating vif, an HIV gene that overrides a natural immune system defense called ABOBEC3G that protects against viruses. Dr. Harold Smith created two new classes of drugs utilizing ABOBEC3G and will be testing them through a small biotech (Oyagen, Inc.). Other potential cure strategies involve immune-based therapies, such as therapeutic vaccines, and gene therapies. Collaboration between entities such as the cure center and discoveries such as these could dramatically advance and accelerate such research that may lead to a functional or eradication cure for HIV. The search for an HIV cure has become a primary focus of many researchers, organizations, institutions, private sector companies, and the National Institute of Allergy and Infectious Disease. The UNC/GSK collaboration, like the new amfAR Cure Center, offers a new means of expediting research that could eliminate years to the process of finding a cure or cures for HIV. Collaboration between the government, and public and private sectors appear to be the way forward in pursuit of a cure or remission for HIV. Without such collaborations, research and vital discoveries will remain fragmented, and the ability to fund promising therapies or strategies will continue to go unfulfilled, struggling for the continuity necessary for development and advancement. Jeannie Wraight is the former editor-in-chief and co-founder of HIV and HCV Haven (www.hivhaven.com) and a blogger and writer for TheBody. com. She is a member of the Board of Directors of Health People, a community-based organization in the South Bronx and an advisor to TRW (Teach me to Read and Write), a community-based organization in Kampala, Uganda. She lives with her husband in New York City. A&U • JULY 2015
illustration by Timothy J. Haines
laxoSmithKline (GSK) and the University of North Carolina at Chapel-Hill (UNC) will launch a jointly owned novel HIV Cure Center, as well as a new pharmaceutical company that will be founded to develop any compounds discovered at the Cure Center. Both the HIV Cure Center and the new company, Qura Therapeutics, will be located on the UNC Chapel Hill campus. The new Cure Center will attempt to unravel some of the mysteries involved in finding a cure or cures for HIV. Qura Therapeutics, LLC, will execute the business end of the UNC/GSK partnership. The newly formed, equally coowned, pharmaceutical company will hold the patents and rights to commercialize any discoveries made at the Cure Center. “A cure for HIV/AIDS requires a new paradigm. The partnership of UNC and GSK that is Qura Therapeutics recognizes that we need both new research approaches and durable alliances of many partners to sustain the effort that will be required to get to a cure. We will integrate science, drug development and translational medicine to create a comprehensive approach to research towards a cure. UNC-Chapel Hill and GSK will continue our existing work and other partnerships in the HIV/AIDS research area. This new partnership does not limit other partnerships, but expands existing efforts,” stated Dr. David Margolis, Director, UNC HIV Cure Center, IGHID University of North Carolina at Chapel Hill. GSK will donate $4 million a year for five years for the initial startup of the Cure Center. The global pharmaceutical company will lend its thirty-plus years of expertise in drug discovery, drug development, manufacturing and marketing to the project. In 2009, GSK partnered with Pfizer and later Shionogi to form ViiV Healthcare, which manages all three company’s HIV portfolios. ViiV holds the rights to twelve HIV medications, the latest of which is dolutegravir (Tivicay), an integrase inhibitor, approved in the U.S. in August of 2013. Currently, ViiV ‘s HIV pipeline consists of a phase II integrase inhibitor called S/ GSK1265744. In 2014, the company gener-
a new hiv cure center & accompanying pharmaceutical company will soon launch
JULY 2015 • A&U
Red State Blues
s A&U reported in the June issue, the rise in HIV and hepatitis C (HCV) diagnoses in Scott County, Indiana, has put the state in crisis mode. The number of new HIV diagnoses in this rural county of 24,000 in the first three months of 2015 alone (population: 24,000) was nearly double the number of new HIV diagnoses among the estimated 100,000 people who inject drugs in New York City in all of 2014. And all of that increase in Scott County is from among people who inject drugs (PWID). The drug of choice in Scott County is Opana, a form of Oxycodone that can be crushed and injected, but use of other injectable opiods like heroin is on the rise in rural America. Though the HIV spike in Scott County is getting most of the national attention, hepatitis C is just as prevalent. Nearly nine in ten people who tested positive for HIV in the county were also diagnosed with the hepatitis C virus. That’s because syringes are a highly effective way of transmitting both HIV and HCV through a population very quickly. In April, amfAR, the Foundation for AIDS Research, reacted to the Indiana outbreak by releasing a brief on the importance of syringe service programs (SSPs) in preventing the spread of these infections. The organization points out that, despite an overwhelming body of scientific evidence demonstrating their effectiveness, the federal government continues to prohibit the use of federal funds for SSPs. That’s a huge problem, because there is little to no state funding for SSPs. Indiana’s governor Mike Pence approved a temporary needle exchange program in March, and in May the state legislature approved a year-long program, but only for that one county. On the date the legislature passed the
law, nearly 200 people were participating in the needle-exchange program there, and nearly 20,000 clean needles had been distributed. But Pence remains opposed to longer-term SSPs as a matter of public policy, as do many red-state governors. Beth Meyerson, Co-Director of the
Rural Center for AIDS/STD Prevention at Indiana University, tells A&U magazine that rural areas throughout the U.S. are vulnerable to spikes in HIV and HCV due to rampant opioid addiction, criminalization of IV drug use, and inadequate funding for prevention and treatment. Greg Millet, vice president and director of public policy at amfAR, agrees. He told A&U that, while urban areas like Chicago and New York have strong needle exchange programs and active education programs for PWID, most of America does not. “What we’re seeing is IV drug use is growing fast in rural America,” Millet says. “Big cities get it in terms of having needle exchange programs to prevent the spread of HIV and HCV. But without federal funding, it is up to the state or private funding to step in for the rural areas.”
The funding is there in Scott County, Indiana, now, but not in other rural counties across the U.S., including across the border in Kentucky—No. 1 in the nation with 4.1 hepatitis C cases per 100,000 residents, according to the CDC. SSP advocates say needle-exchange programs became popular in the 1980s and have been crucial in drastically reducing HIV and hepatitis rates, but have faced opposition from law enforcement and lawmakers. More than 200 SSPs are currently operating in thirty-four states across the country. They’re funded primarily through state and local governments, with occasional help from foundations. But a Congressional ban passed in 1998 prohibits the use of federal funds to support SSPs and prevents state and local jurisdictions from spending their federal public health allocations on these programs. The Obama administration lifted the ban on federal funding for exchange programs in late 2009, but 2011, Congress reinstated it as part of a last-minute budget deal. The de-facto federal prohibition on needle exchange is costing lives needlessly, Millet says. “Policy makers are not following science or data. And the science says these [SSP] programs save lives. We have seen that in urban areas.” SSPs prevent new infections in several ways, Millet adds. These programs get people in for testing, and get linked to the healthcare system. In addition to needle disposal and exchange, there is often on-site medical care and counseling and referrals to drug counseling. “Scott County is the harbinger of things to come,” Millet says. “States that have no sound health policy, no funding [for SSPs] and growing IV drug use is a combustible mix.” Larry Buhl is a radio news reporter, screenwriter, and novelist living in Los Angeles. His podcast on employment issues, “Labor Pains,” can be found at www.laborpainspodcast.com. A&U • JULY 2015
illustration by Timothy J. Haines
advocates demand federal dollars for needle exchange programs
Massage for Stress get in touch with caring for your immune system
illustration by Timothy J. Haines
here are many different types of massage, but I would like to put the exhaustive list of specialized options aside and focus on the broader subject of stress, its physiological impact and how to potentially reduce it via Swedish massage. The negative physiological impact of stress is well documented and reducing stress is paramount to everyone. However, stress reduction for individuals living with HIV should be among the top priorities; not only due to the wide range of stress related illnesses, but due to the impact of stress on the immune system. Swedish massage, or full body, classic massage, is an underutilized and misunderstood modality. It is moderately pressured work that is sometimes seen as merely pampering. Understandably so. These sessions are often marketed with flickering candles, incense and flower petals scattered about the room. Don’t let the pomp and circumstance fool you. There are real physiological benefits to a Swedish massage; benefits that may play an important role in wellness for individuals living with HIV. Your autonomic nervous system (ANS) plays a pertinent part in stress and its impact on your body. It regulates certain physiological processes and works automatically, without any conscious effort on our part. It controls functions such as body temperature, respiratory rate, blood pressure, heart rate, digestion, metabolism, urination, defecation, sexual response and more. The ANS is broken down into two main divisions—the sympathetic and parasympathetic nervous systems. The parasympathetic nervous system is responsible for something you may know as “rest and digest.” The sympathetic nervous system is responsible for “fight or flight”, also known as the stress response. Fight or flight is a survival mechanism that prepares us on a physiological level to respond to threats to our wellbeing. When presented with a threat or stressful situation, be it real or perceived, physical or psychological, the ANS activates the sympathetic nervous system and triggers the fight or flight response. When survival depends on the ability to defend ourselves or flee, fight or flight is a necessary evil. But, the physiological impact of fight or flight can easily be considered a foundation on which stress related medicine
JULY 2015 • A&U
is built. Stress has far-reaching, detrimental effects on our health in general, but stress also suppresses the immune system; and this is something to consider if you are trying to rebuild your immune system as someone living with HIV. In stressful situations, adrenaline and norepinephrine, stress hormones produced by the adrenal glands, are released into the body and cause physiological changes. We begin to sweat. Our heart rate and respiratory rate increases. A portion of our blood supply is diverted away from our digestive tract, hence halting digestion and elimination, and is redirected into our muscles, which require extra energy in a survival situation. Our senses, impulses and reactions become sharper and faster. Even the sensation and perception of pain diminishes. In addition to adrenaline and norepinephrine, cortisol is released into the body; high cortisol levels are known to suppress the immune system. This can certainly be a concern in someone already managing compromised immune function. Can imagine the long term effects on a body in frequent or chronic fight or flight mode? According to the Mayo Clinic, “The long-term activation of the stress-response system—and the subsequent overexposure to cortisol and other stress hormones—can disrupt almost all your body’s processes. This puts you at increased risk of numerous health problems, including anxiety, depression, digestive problems, heart disease, sleep problems, weight gain, memory and concentration impairment.” On the kinder, gentler side of the ANS is the parasympathetic nervous system, which is responsible for “rest and digest.” When activated, digestive functions increase, blood pressure, heart and respiratory rates lower, and circulation normalizes, sending blood to the internal organs. Parasympathetic processes help to promote homeostasis, or balance, they induce a restorative rest; giving your body the ability to work to its maximum achievable potential and promote self-healing. Swedish massage is known to induce a parasympathetic state. Studies in The Journal of Alternative and Complementary Medicine examined the effects of Swedish massage on the body’s hormonal
response and immune function. Researchers concluded that Swedish massage produces measurable biological effects and may have a positive effect on mood and the immune system. Dr. Tiffany Field, Director of the Touch Research Institute at the University of Miami Medical Center, reviewed the positive effects of massage therapy on biochemistry. In studies in which cortisol was assayed either in saliva or in urine, significant decreases were noted in cortisol levels. Serotonin and dopamine levels were also reviewed. Serotonin is an inhibitory neurotransmitter–which means that it does not stimulate the brain. Adequate amounts of serotonin are necessary for a stable mood and to balance any excessive excitatory neurotransmitter firing in the brain. Dopamine helps with depression as well as focus. In studies in which serotonin and dopamine were assayed in urine, an average increase of twenty-eight percent was noted for serotonin and an average increase of thirty-one percent for dopamine. These studies combined suggest the stress-alleviating effects of massage therapy on a variety of medical conditions and stressful experiences. Much of my own practice revolves around stress reduction and alleviating the symptoms associated with chronic anxiety. While complex, specialized treatments certainly have their place given certain circumstances, I cannot stress the importance of Swedish massage enough. I believe that physiological balance and restorative rest are important steps on the path to overall wellness. Robert Zukowski is a New York State licensed Massage Therapist, a Certified Medical Massage Therapist and is certified by the National Certification Board for Therapeutic Massage and Bodywork. In addition to his hands-on work, he is a writer and lecturer in the field of therapeutic massage therapy.
Whose Bodies Matter?
ete was one of the first people to befriend me when I joined Queer Nation and ACT UP. A radical, militant, pink-haired, steel-toe-booted, HIV-positive Chicano activist, he wore his heart and his politics on his sleeve. Literally. Everything he wore was covered in Queer Nation and ACT UP stickers: “Stop This Sexist Shit,” “Fight Homophobia,” “Safe Sex Queer,” “Silence=Death,” and “Listen Up Bigots: An Attack On One Of Us Is An Attack On All Of Us.” Pete showed up early on Saturday mornings to defend women’s health clinics from anti-abortion activists Operation Rescue. In between swallowing his morning pills, he would say to me, “girl, we have to stand up for each other. No one else will. Besides, the same ones coming after you are the ones coming after me.” We didn’t use the language of intersectionality, but that’s what Pete meant. The problem with single-vision politics is that we are never safe when we leave each other, or parts of ourselves, behind. Most of us occupy multiple locations of targeting and exclusion. When we isolate our oppressions and isolate our movements, we isolate ourselves. For most of May, the news was filled with images of Black Lives Matter rebellions erupting in Baltimore after the death of Freddie Gray at the hands of the Baltimore police. I am grateful for the power of those rebellions. However, just a few weeks before Gray’s death, a transwoman named Mya Hall was shot to death by authorities after taking a wrong parkway exit in Baltimore. She was unarmed. She was a Black transwoman and a sex worker. In the small bit of mainstream news that mentioned her, she was repeatedly referred to as a mentally unstable drug user, and misgendered. Whose bodies matter? Whose lives matter? In 1991 Pete and I were arrested at a demonstration protesting former L.A. Police Department Chief and California State Senator Ed Davis whose SB982 sought to criminalize sex for people who were seropositive if they didn’t disclose their status— even if they practiced safe sex. We called it “The Sex Police Action.” “If we’re talking about sex, we’re talking about people consenting and making decisions, and no
michael johnson, mya hall, pete jimenez & the criminalization of the disavowed one is a criminal,” Pete insisted. “We can’t let them criminalize sex or our right to our sexuality. HIV is a virus, not a crime.” In the shadows of the Baltimore Black Lives Matter rebellion, Michael Johnson, a Black college wrestler in Missouri, was convicted under similar laws. To whom, and how much does his life matter? There is a danger of falling back on the regressive, thirty-year-old language of innocent victims. And there is always the danger of simplification. I can hear Pete insisting that we can’t disavow those whose lives complicate the narrative. We can’t talk of the Black men shot while walking away from the cops and not talk about the criminalization of transwomen. We fear it is too complicated to talk about intersections of race, gender, drug use, and mental illness—especially when it’s painfully clear that sometimes drug use and mental illness are code for the overwhelm, confusion, and collapse that come from trying to survive in a system that seeks to destroy you. Whose bodies matter? Whose bodies will we stand up for? Who do we avoid standing with because we fear judgment of guilt by association without questioning whether we believe in the validity of the charges? So many of us queers are so well acquainted with shame and anxiety that it is all too easy to disavow and dissociate from the experiences of those who we fear we could become. In psychoanalytic theory we think about disavowal as rejecting the reality of a perception because of its potentially traumatic associations. Disavowal is the process that allows us to turn from Michael Johnson and say that we aren’t like him because the idea of being persecuted—like him—for our consenting sexual relationships is horrifying. Likewise, we turn away from Mya Hall because we don’t want to recognize the places in ourselves that may embody pain and joy as messy, chaotic, and dangerous. We disavow our vulnerabilities and we disavow our privileges. And sometimes our privilege is as simple as basic survival. We get so overwhelmed by the dailiness of survival that we forget to stand with those whose survival is not secure. Pete taught me that. When he was hospitalized for AIDS-related illnesses, over and over, in the twenty years I knew him, he insisted on advocating for
other PWAs in his hospital wings. “Pete,” we would say, over and over, “will you please rest, honey?” “I can’t yet,” he would insist, pointing at the patient in the next bed or the next room, “they don’t have anyone to advocate for them. I’m lucky. I have people. They need help. We have to be their people.” Until all of our bodies and all of our lives in their complications, messiness, and contractions matter equally, what kind of justice can we have? People so badly want to believe risk can be avoided that they insist that if someone risks viral exposure, or seroconverts, their partner must be a criminal. Even if everyone were a consenting adult and making their own decisions. We want so badly to avoid risk when we are already vulnerable, that we forget that it is a privilege granted to very few to live where insisting on survival is not a risk behavior. How can we reconceive of risk and justice as part of vitality? As part of the necessary force that connects us to one another as much as it connect us to ourselves? Sex has risks. Life has risks. Connections carry the risk of injury whether it is the risk of a virus or the risk of loss. Pete died three years ago. Those of us who survived him are still heartbroken. He fought for everyone up until he died. This is what he taught me. This is his legacy. Seeing the connections is overwhelming. But it is also an antidote to the isolation of shame that can consume us when we are the victims of targeting. When we begin to understand that our victimization is the result of systemic violence and discrimination, then how can we not stand with one other? Our righteous rage must be part of the dismantling of our compliance with a system that seeks to destroy us. Keiko Lane, MFT, is a Japanese American writer and psychotherapist. She writes about the intersections of queer culture, oppression resistance, racial justice, and liberation psychology. She has a psychotherapy practice in Berkeley, California, specializing in work with queers of all genders, artists, activists, academics, people affected by HIV/AIDS, asylum seekers and other clients self-identified as post-colonial. Keiko also teaches graduate and post-graduate psychotherapy courses on queer and multicultural psychotherapies, the psychodynamics of social justice, and the embodied literature of exile. She is a long-term survivor of ACT UP/Los Angeles. Visit: www.keikolanemft.com. A&U • JULY 2015
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JULY 2015 â€˘ A&U
E R U CULT S THE
Smash Cut A Memoir of Howard & Art & the ‘70s & ‘80s by Brad Gooch
here’s always a song, a poem, or a verse that sticks with us from the moment we first hear it or come to understand its meaning, and follows us through most of our lives. In the very first pages of his new AIDS memoir, Smash Cut, Brad Gooch mentions such a verse by the German poet Heinrich Heine, from a poem about a mermaid (called Lorelei) who sings on a giant rock in the middle of the Rhine River, luring boatmen to their death. In Smash Cut, the Lorelei legend comes to life, yet again, luring many—too many— individuals to what turned out to be one of the most ravaging plagues of modern days—the AIDS pandemic. Smash Cut tells a story from the early years of AIDS, offering a complete and intimate narrative of a time before, during, and also after the height of the epidemic. In many ways Smash Cut is a love story like no other, documenting the ardent relationship between the author, Brad Gooch, and film director Howard Brookner during the seventies, surrounded by glitz and glamour, and the likes of Robert Mapplethorpe and Madonna, and also by
temptations, such as drugs and random sex. But the AIDS epidemic of the eighties put an end to the show, and to the lives of many individuals, including Brookner. Few were able to steer clear, and, like Gooch, be alive and well today to tell their stories of what life could have been for so many others, had they not fallen prey to the siren’s song. Smash Cut is an eye-opening read, an intimate account of the silence before the AIDS storm, a silence deafened by the bright lights of the glitz and glory we all may long for at times. A testimony to what could happen when the bright lights dim down to the blackest darkness, Smash Cut is also a lesson in survival, teaching present and future generations how to avoid mirages and obstacles, while living the best life possible. —Alina Oswald
Prick Queasy by Ronald Palmer
ne of the legacies of AIDS activism is the power and possibility of queer anger. ACT UP, along with several other organizations, demonstrated (and has left a substantial record of) the efficacy of rage and confrontation, what it can mean to be united in anger. Ronald Palmer’s Prick Queasy provides a timely reminder of the uses and erotics of such anger, at a moment when confrontational politics continue to rattle social foundations. A Lambda Literary Award finalist, Palmer’s novel imbricates the murder of poet Hart Crane with the novel’s homicidal protagonist, Russ Wade. Ruggedly handsome with hands made for gripping basketballs and flesh in equal measure, Wade embodies Sylvia Plath’s lines, “Every woman adores a Fascist, / the boot in the face, the brute / Brute heart of a brute like you,” if gay porn star Spencer Reed were the brute in question. Hart Crane uses his acolyte Russ Wade to murder closet-cases and toe-tapping-conservative types in vengeance for his own wrongful death at the hands of a sailor, a lad who extinguished his desire and left his mouth to go back to family, country, and duty. And this tension is given heat through Palmer’s
inspired prose, which recuperates the sexy ambivalence of Crane’s. Take for example this monologue from the spirit of writer and companion Waldo Frank, who joins Crane at the bottom of the sea: I remember your favorite line: I’ve wanted to kill myself with sex. You’d love the bug hunters of this new century begging to be seeded by an HIV positive man. Remember your unpublished poem, “Love Is a Virus?” Well, like most prescient phrases, it’s come true. For me and for you. This is Waldo you’re talking to. Ghost to ghost, both of us haunting, both of us wandering the wreckage. Peculiar how ghosts are unwilling to haunt each other. Trapped by the weight of the sea—in Palmer’s opening, I can hear the latch of history clicking into place, out of place—these ghosts are piss drunk with desire. Prick Queasy concentrates on the relationship between the past and the present, giving the underbelly its due, an ethics of haunting that refuses to be nostalgic, refuses to give up on anger and rage as means of queer sociality and politics. Palmer’s novel urges and titillates, a finger around the rim of the questions: How do queers resuscitate anger? How do queers collect again under the sign of rage? Palmer edges our ambivalence as Wade steps forward as a new Coriolanus, frotting the rage left to years gone by. —Eric Sneathen Alina Oswald is Arts Editor of A&U. Eric Sneathen lives in Santa Cruz, California, where he is studying for his PhD in Literature. His reviews have been published by Small Press Distribution and Tripwire, and his poetry has been published by Mondo Bummer, The Equalizer, and Faggot Journal. A&U • JULY 2015
A Calendar of Events
Wade Davis continued from page 31
he nineteenth annual United States Conference on AIDS (USCA 2015) will chart innovative strides in HIV advocacy, research, prevention, and care, bringing together experts and participants from across the country to join insightful discussions about living with HIV and AIDS. From September 10 to 13 in Washington, D.C., the NMAC-organized conference will host seminars, workshops, and roundtables that will delve into social media, outreach to LGBTQ communities of color, PrEP, funding Ryan White, cure science, couples testing, behavioral health, sustaining HIV services, telemedicine, syringe access, using new media, HIV prevention and women, and services for immigrants who are HIV-positive, among many others. Of special note, there will be a Black Treatment Advocates Network Preconference at National Black PrEP Summit at USCA, on September 8 and 9. On September 10, at the USCA’s Federal Plenary, House Minority Leader Nancy Pelosi will be awarded the Elizabeth Taylor Legacy Award from The Elizabeth Taylor AIDS Foundation for her career-long legislative commitment to the fight against AIDS. New this year at the conference is the Masters Series for Leadership, a series of big-question seminars of high-profile leaders across science, care, and activism. Among the speakers are Dr. Anthony S. Fauci, who will address vaccines, biomedical prevention and cure approaches; Moises Agosto, Jacqueline Coleman and Dr. Kim Johnson will discuss race, racism, health
and, as Davis puts it, “lift the veil off this awful disease.” But starting the conversation is only the first step. The next step involves ending poverty. “I think the root of this epidemic is poverty,” Davis says. “So, how do we start to end poverty, because, whether we’re talking about heart disease or obesity, those things are prevalent in the South, and poverty is at the root of [these medical conditions,] too.” He suggests having a conversation about jobs—access to work goes hand in hand with access to better health outcomes. Another way to fight HIV/AIDS is to address the related stigma, and also the visibility that comes with opening up about being HIV-positive, and the safety factors that come with that decision. “We have to be very mindful. Being visible could also be a huge risk,” Davis says. That risk could be addressed by engaging others in the HIV/ AIDS conversation, people who are not HIV-positive, and those who do not identify as LGBT. After all, HIV/AIDS might still be perceived as a white, gay male disease, but it is not a gay disease. It can affect anybody, in particular the African-American community, in particular those living in the South. Truth is that many young LGBT African-American individuals don’t find acceptance in their own community. “When you are a gay man, especially a black gay man, your dating pool is smaller, because of racism, stigma...and the exposure to HIV is high-
equity, and racial justice; Dr. Eugene McCray, MD, will tackle the future of HIV prevention, especially among young black MSM; and Peter Staley [A&U, June 2015], who will delve into the history and current role of activism. Dates: September 10–13; location: Marriott Marquis, 901 Massachusetts Avenue NW, Washington, D.C. For more information, log on to: www.2015usca.org.
er,” Davis comments. When young people are not accepted in their own community, it’s only natural for them to try to find acceptance somewhere else, often in all the wrong places. Sometimes, people as young as fourteen or eighteen years of age are forced to survive on their own, on the street, to use their bodies to pay the bills. “We need to take the stigma off of that, too,” Davis says. Wade Davis may symbolize the American dream come true for many young individuals, especially young men who dream of playing in the NFL. For too many of these young men that kind of dream remains only an impossible dream, because of poverty, stigma, bullying, discrimination or other factors. That may not be the case, if they listen to what Wade Davis has to tell them. “The first thing I’d tell them,” he says, “is to never give up their dreams. Know that, beyond being an NFL athlete, I’m someone who is educated. I took my education very seriously. Working hard to be the best athlete is only part of it. But being [educated] makes your role of being a professional athlete that much easier. Being a great athlete is just...one of those things that you should have in your toolkit, but there are other things, as well, like being a good person, exhibiting courage in the face of all kinds of odds. So, whether standing up for a teammate or classmate who may be bullied, exhibiting courage in moments when you may not be sure how
to respond...I think that having courage is a main part of it as well. And also, putting [yourself ] consistently in uncomfortable situations, because that helps make you better. As an athlete, they put you in a space where you’re uncomfortable, because they try to get the best out of you. Individuals should practice this off the playing field as well.” Wade Davis mentions a quote by Martin Luther King, Jr.: “In the end we will remember not the words of the enemies, but the silence of our friends.” He explains that we can start fight the epidemic by seeing others as our mirror images, because, after all, we are not that different. “Everybody understands what it’s like to be alone or afraid. These are the exact emotions that people who are HIV-positive experience,” he points out. “I may not be HIV-positive, but HIV impacts me, because it does impact people who look like me, and people who I care about. We are in this together.” To find out more about PrEP Up Alabama and the work of AIDS Alabama, please visit www. aidsalabama.org. To find out more about Wade Davis, please visit him on Facebook, at www.facebook.com/pages/Wade-A-DavisII/327639733956237. Alina Oswald, Arts Editor of A&U, is a writer, photographer, and the author of Journeys Through Darkness: A Biography of AIDS. Contact her at www.alinaoswald.com. A&U • JULY 2015
JULY 2015 • A&U
[a portrait by sean black]
Kurt Weston Huntington Beach, CA Kurt Weston, a world-class glamour photographer, was diagnosed with AIDS in 1991 and in 1996 became legally blind due to a related condition, Cytomegalovirus retinitis. He also experienced one of the most highly visible manifestations of the virus—Kaposi’s sarcoma. The purplish red lesions all over his face and body easily identified him as having the disease and he experienced the stigmatization many living with the virus endured during this time. After surviving AIDS and negotiating his sight loss, Weston turned his focus from fashion to fine art and advocacy. His photographs have drawn much attention, spawning articles and art exhibitions. His work is exhibited internationally and has been featured in articles and on TV. “The arts have provided me the opportunity to act as a political and social practitioner, representing my life circumstances and resulting disability. Speaking from the perspective of marginalization, exclusion, and oppression, I have advocated in Sacramento, California, for the continued funding of ADAP. I am also a prevention speaker for AIDS Services Foundation of Orange County and speak on a regular basis to college students about my struggles living with HIV and surviving AIDS. I reinforce the ‘no cure’ message in my lectures: ‘There is no cure so do whatever you can to avoid contracting this terrible virus. When you discover your life’s passion you don’t want the HIV virus to hold you down, you don’t want to have to cope with the ordeal of daily medications, their costs and side effects. Of course, it is possible to live with HIV, but it is a challenge and constant struggle.’”
Sean Black is a Senior Editor of A&U. 56
A&U • JULY 2015
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Cover Story - Daniel Franzese ON HOW HE BECAME AN HIV ADVOCATE & WHY HE WILL NEVER STOP _____ PrEP Up Alabama ADVOCATE WADE DAVIS HELPS KIC...