Black Treatment Advocates Network Rolls Out in D.C. • A New Inhibitor Gets the O.K.
SEPTEMBER 2013 • ISSUE 227 • AMERICA’S AIDS MAGA-
UNCONVENTIONAL WISDOM Actor Michael Kearns Keeps On Top of Long-Term Surviving
plus Seniors Confront the Challenges of HIV Health
Hill Harper The Actor & Author Shines a Positive Light on HIV/AIDS & Health
What is STRIBILD? STRIBILD is a prescription medicine used to treat HIV-1 in adults who have never taken HIV-1 medicines before. It 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 herb 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 prescription medicine used as a complete single-tablet regimen to treat HIV-1 in adults who have never taken HIV-1 medicines before. STRIBILD does not cure HIV-1 or AIDS.
I started my personal revolution Talk to your healthcare provider about starting treatment. STRIBILD is a complete HIV-1 treatment in 1 pill, once a day.
Ask if itâ€™s right for you.
Patient Information STRIBILDTM (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 is a complete regimen and should not be used with 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.
• 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®) • oral midazolam
What is the most important information I should know about STRIBILD?
• pimozide (Orap®)
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
• sildenafil (Revatio®), when used for treating lung problems
• rifampin (Rifadin®, Rifamate®, Rifater®, Rimactane®) • 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 tenofovir (Atripla®, Complera®, Viread®, Truvada®) • Other medicines that contain emtricitabine, lamivudine, or ritonavir (Combivir®, Emtriva®, Epivir® or Epivir-HBV®, Epzicom®, Kaletra®, Norvir®, 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: • Nausea • Diarrhea Tell your healthcare provider if you have any side effect that bothers you or that does not go away. • These are not all the possible side effects of STRIBILD. For more information, ask your healthcare provider. • Call your healthcare provider for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088. What should I tell my healthcare provider before taking STRIBILD? Tell your healthcare provider about all your medical conditions, including: • If you have or had any kidney, bone, or liver problems, including hepatitis B infection • If you are pregnant or plan to become pregnant. It is not known if STRIBILD can harm your unborn baby. Tell your healthcare provider if you become pregnant while taking STRIBILD. – There is a pregnancy registry for women who take antiviral medicines during pregnancy. The purpose of this registry is to collect information about the health of you and your baby. Talk with your healthcare provider about how you can take part in this registry. • 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 nonprescription 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 contains 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 hydrochloric (Vascor®, Bepadin®) - bosentan (Tracleer®) - buspirone - carbamazepine (Carbatrol®, Epitol®, Equetro®, Tegreto®) - clarithromycin (Biaxin®, Prevpac®) - clonazepam (Klonopin®) - clorazepate (Gen-xene®, Tranxene®) - colchicine (Colcrys®) - medicines that contain dexamethasone - diazepam (Valium®)
- digoxin (Lanoxin®) - disopyramide (Norpace®) - estazolam - ethosuximide (Zarontin®) - flecainide (Tambocor®) - flurazepam - fluticasone (Flovent®, Flonase®, Flovent® Diskus, Flovent® HFA, Veramyst®) - itraconazole (Sporanox®) - ketoconazole (Nizoral®) - lidocaine (Xylocaine®) - mexiletine - oxcarbazepine (Trileptal®) - perphenazine - phenobarbital (Luminal®) - phenytoin (Dilantin®, Phenytek®) - 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 - telithromycin (Ketek®) - 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: August 2012
COMPLERA, EMTRIVA, GILEAD, the GILEAD Logo, GSI, HEPSERA, STRIBILD, the STRIBILD Logo, TRUVADA, and VIREAD 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. © 2013 Gilead Sciences, Inc. All rights reserved. QC14549 02/13
LOS ANGELES OCT. 13, 2013 A fundraising walk starting and ending in West Hollywood Benefiting
and more than 20 other L.A. County AIDS service organizations.
SIGN UP TODAY!
213.201.WALK Text WALKLA to 292929 to register! A Special Thank You to
Created and produced by MZA Events. AIDS Walk Founder/Producer: Craig R. Miller. ÂŠ MZA Events, 2013
c o n t e n t s September 2013
38 Cover From Fighting for Social Justice to Advocating for HIV/AIDS, Covert Affairs Star & Author Hill Harper Talks to A&U’s Dann Dulin About What Energizes Him to Stay On Track with His Positive Message
Features 34 Gallery Solis Creates an Out-of-this-World Vision to Encourage Engagement 28 Facing Old AIDS What Do You Need to Know About Aging & HIV Health?
31 My So-Called Positive Life Older Adults Living with HIV/ AIDS Seek & Find Support
Left Field by Patricia Nell Warren
44 Good to Be Bad Actor Michael Kearns Shares Rich Lessons from Long-Term Surviving
48 Oh, the Places We’ll Go! (Or Not!)
If You’re Going Abroad, Check Out Our Checklist for Traveling with HIV
The Culture of AIDS
cover & inside photos by Duane Cramer
Talk That Talk
ince the beginning of the epidemic—as it was first reported by The New York Times on July 3, 1981—the amount of ink (as well as electronic ink) about HIV and AIDS has wildly fluctuated. When Rock Hudson disclosed his HIV status, condoms were discussed for the first time around the dinner table of millions of Americans; when Magic Johnson came out as HIV-positive, testing skyrocketed, and AIDS awareness was driven home to both the suburbs and the sports arenas. And then there was a deafening silence. It was as if AIDS had all but disappeared, or it became a “problem” only in Africa and Asia, according to the media. But guess what? The number of people now living with an end-stage form of AIDS in the developing world has gone down for the first time. Why? Nearly one out of three persons living with the virus in Africa is taking at least one form of antiretroviral therapy. And those that were near death are now thriving. In South Asia the figure is one in four. Hardly 100 percent, or universal access, but certainly a vast improvement over the situation just three years ago. For all the good news abroad there are some sobering statistics right here at home. Less than fifty percent of Americans living with HIV see their docs on a regular basis. Ironically, the percentage of people in HIV care in the United States is lower than in some so-called emerging countries like Brazil. America has the most expensive healthcare system in the world; but also one of the least efficient. Partly it’s due to the fact that not everyone who is HIV-positive in this country knows their status. The fact is that living with HIV isn’t easy; even with the newer drugs—which require less complicated dosing—disparities in healthcare delivery still occur. But let’s not complain too much. Let’s go back a decade or two. One particularly bad year was 1994, just a few short years before the advent of protease inhibitors. I remember reading more AIDS-related obituaries that year than any year before—many friends in their forties and fifties, the first generation of AIDS, were finally succumbing to AIDS-related opportunistic infections. These days, those who are long-term survivors over fifty are
A M E R I C A’ S A I D S M A G A Z I N E issue 227 vol. 22 no. 9 September 2013 editorial offices: (518) 426-9010 fax: (518) 436-5354
those who benefited from the first round of protease inhibitors, and they are still alive today due to even newer classes of AIDS drugs. In this issue, Larry Buhl investigates the latest on HIV and aging; first he uncovers services and support available (or not) to those over fifty and positive, and then he delves into the specific health challenges for those facing their golden years. And they can be golden. As he suggests, it’s never too late to thrive. Also, in this issue, the cover story with actor and author Hill Harper proves it’s never too late to thrive for anyone, in any circumstance. Whether he is writing about AIDS advocacy or fighting for social justice, Harper believes in the power of positive thinking as an essential part of activism. Speaking of the power of the written word, America’s leading activist of AIDS journalism, Patricia Nell Warren, contributes her final Left Field piece for the magazine after a tenure of fourteen years. Over the years “Patch,” as she is known to the A&U staff, has explored government corruption, drug pricing, and religious ideology, to name a few issues. We will sorely miss her unfettered voice in an age of media constraint. PNW is never afraid to swim against the currents of mainstream AIDS media. She will continue to write, and surely she will be one of the journalists to report on the end of AIDS, when that time comes. From villages in Botswana to Greenwich Village in New York, we are working toward that end. HIV is no longer out of control. Breakthrough medicines are keeping the virus undetectable. Poor countries and rich countries alike are sharing in the wealth of knowledge, treatment options, and continuing care that is required to reverse the devastation caused by AIDS. First there were doctors without borders; now, increasingly, there are patients without serious disease. As Hill Harper tells us, “Awareness is very important in this epidemic. We need to talk about it...because it saves lives.”
Editor in Chief & Publisher David Waggoner Managing Editor: Michael Needle Senior Editor: Dann Dulin Editors at Large: Chip Alfred, Sean Black Special Projects Editor: Lester Strong Literary Editor: Brent Calderwood 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, Annie Buckley, Larry Buhl, Ruby Comer, Nancy Ellegate, LaMont “Montee” Evans, Diane Goettel, Sally Hessney, Angela Leroux-Lindsey, Sherri Lewis, Alina Oswald, Dale Reynolds, Elizabeth Rodgers, Mariel Selbovitz, Justin B. Terry-Smith, Patricia Nell Warren, Chuck Willman, Jeannie Wraight 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, Stephen Churchill Downes, Greg Gorman, Francis Hills, Renée Jacobs, 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. ©2013 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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DANCE FOR LIFE PU 4/C OUR CITY. OUR LIVES.
SATURDAY, SEPT. 28 SOLDIER FIELD REGISTER TODAY AIDSRUNWALK.ORG PRODUCED BY
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“It’s interesting to find out that IronE Singleton was also in a school production of Angels in America. As most people know this is a quintessential play about HIV/AIDS. IronE definitely knows what AIDS is about and he wants to do everything he can to educate people about it. I’m glad he is ‘committed to the role,’ as they say. It shows real character.”
It is quite amazing all the people around IronE Singleton who have died from AIDS [cover story, “Iron Man,” by Sean Black, July 2013]. IronE in part says, “In 1993 I lost my mom, ’94 a cousin, ’95 an uncle, ’96 another cousin. In 1997 my uncle’s girlfriend—who I’d grown up with; then a very close friend of mine—he passed from it in 2000.” IronE continues, “I could name at least ten more people I was one-degree away from, whom I was close to, who’ve died.…It’s very alarming and that’s why we have to continue the fight.” It is alarming to say the least that AIDS has claimed so many. And in spite of this, IronE has come out a better person and a very good actor. Let’s keep the fight going against AIDS. —Dolores Inbarrara Geneva, Illinois I thought IronE Singleton’s performance on The Walking Dead was one of the liveliest (no pun intended!). He is definitely an actor who is on the way up. It’s interesting to find out that he was also in a school production of Angels in America. As most people know this is a quintessential play about HIV/AIDS. IronE definitely
knows what AIDS is about and he wants to do everything he can to educate people about it. I’m glad he is “committed to the role,” as they say. It shows real character. —Rosemary Dunning Bremerton, Washington
Rap, by Ruby Comer, July 2013]! Is she that desperate? Rodriguez knew about AIDS, and in spite of this knowledge he went out and had unprotected sex with strangers. Am I hearing and reading this correctly? Now he is HIV-positive; gee, I wonder why? Knock my socks off or what. And now Rodriguez is a paid escort! I just could not believe what I read in Ruby’s Rap. Or should we call the column Ruby’s Scam? Give me a break on this interview. —Michael Plathoris Sparks, Nevada
Gloria Allred is one of those persons that define what America is all about. You were right to title the piece: “The Good Fight” [by Dann Dulin, July 2013]. She is out there fighting the good fight for all of us who are the victims of injustice and unfairness. She is not afraid to take on the big guys; sometimes they need to be brought down. I admire her and respect her. I am glad that she took on the case of Paul Jasperson, a man living with AIDS, and won the case. It is too bad that Paul did not see justice finally served. —Ronda Matelic Green Bay, Wisconsin
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Get Real, Ruby!
All correspondence requires name, address, and daytime phone number for confirmation. Letters may be edited for length and clarity.
Correction: The year of Olivia Culpo’s Miss Rhode Island title in the August cover story was misidentified. Olivia was Miss
Is Ruby for real or what? Interviewing someone like Frank Rodriguez [Ruby’s A&U • SEPTEMBER 2013
photo by Commaleta Singleton
Coming Back to Life
NEWSBREAK Conference Watch The 8th Annual National Conference on HIV/AIDS & Aging, presented by the New England Association on HIV Over Fifty (NEAHOF), will open its doors for a one-day conference on September 27 at the John F. Kennedy Presidential Library and Museum in Boston, Massachusetts. Topics will cover prevention, care, and management in the age of affordable healthcare, including sessions on the Affordable Care Act and Ryan White CARE Act, elder services across communities, spotlights on hepatitis and cancer, among other issues. Made possible through a collaboration with the New England AIDS Education & Training Center, the conference will provide a complex perspective of aging with HIV. For more information, log on to: www.hivoverfifty.org. The Infectious Diseases Society of America (IDSA), the Society for Healthcare Epidemiology of America (SHEA), the HIV Medicine Association (HIVMA) and the Pediatric Infectious Diseases Society (PIDS) combine forces to bring you IDWeek 2013. All the latest in ID—infectious disease, that is—will be covered: prevention, diagnosis, treatment, and epidemiology. Of special note: Presenters will cover HIV resistance testing, non-ID co-morbidities, HIV cure updates, advances in HIV prevention and treatment, healthcare reform and the future of HIV care, and much more. The conference runs from October 2–6 at the Moscone Convention Center in San Francisco, California. For more details or to register, log on to: www.IDWeek.org.
A Rainbow in the Desert Pride Card Services deserves some credit—a lot, in fact. The gay-owned and operated full-service payment processing company provides opportunities for merchants to support HIV/AIDS, civil rights and equality-focused charities, and they also practice what they preach. Case in point: Pride Card Services recently partnered with Desert AIDS Project (DAP) to help boost their fundraising and support the organization’s vital work in Palm Springs, California, to meet the needs of individuals living with and affected by HIV/AIDS. As part of its $250-20-20 program, Pride Card Services will donate $250 to Desert AIDS Project for each new merchant that signs up, plus ongoing donations equal to twenty percent of the net income on the merchant’s account for as long as they are with Pride Card. And, as an added incentive, the company offers up to twenty percent off processing costs for each new merchant account opened. Marking twenty-six years of service, Desert AIDS Project provides medical care, comprehensive support services, testing, treatment, counseling, transportation, housing, and financial assistance to those affected by HIV/ AIDS. The organization and its supporters are prepping for its community’s AIDS Walk on October 19. For more information, log on to: www.4pride.com and www.desertaidsproject.org. SEPTEMBER 2013 • A&U
ment options. out my HIV treat ab e or m rn lea part I was ready to e ISENTRES S as ctor and we chos do y m to e ok sp V HI So I it could fight my en. He told me of my HIV regim . eds and lifest yle and may fit my ne . miss a beat I donâ€™t want to Individuals with HIV
In a clinical study lasting over 4 years (240 weeks), patients being treated with HIV medication for the first time demonstrated that ISENTRESSÂŽ (raltegravir) plus Truvada:
INDICATION ISENTRESS is a prescription HIV-1 medicine used with other HIV medicines to treat adults with human immunodeficiency virus (HIV-1) infection. HIV is the virus that causes AIDS (Acquired Immune Deficiency Syndrome). The use of other medicines active against HIV-1 in combination with ISENTRESS may increase your ability to fight HIV. ISENTRESS does not cure HIV infection or AIDS. Patients must stay on continuous HIV therapy to control infection and decrease HIV-related illnesses. IMPORTANT RISK INFORMATION Severe, potentially lifethreatening, and fatal skin reactions and allergic reactions have been reported in some patients taking ISENTRESS. If you develop a rash with any of the following symptoms, stop using ISENTRESS and contact your doctor right away: fever, generally ill feeling, extreme tiredness, muscle or joint aches, blisters or sores in mouth, blisters or peeling of skin, redness or swelling of the eyes, swelling of the mouth or face, problems breathing. Sometimes allergic reactions can affect body organs, like the liver. Contact your doctor right away if you have any of the
May reduce viral load to undetectable (less than 50 copies/mL) May significantly increase CD4 cell counts ISENTRESS may not have these effects on all patients Patients had a low rate of these moderate-to-severe common side effects (that interfered with or kept patients from performing daily activities): trouble sleeping (4%), headache (4%), nausea (3%), dizziness (2%), and tiredness (2%). following signs or symptoms of liver problems: yellowing of the skin or whites of the eyes, dark or tea-colored urine, pale-colored stools/bowel movements, nausea/vomiting, loss of appetite, pain, aching or tenderness on the right side below the ribs. 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. Tell your doctor right away if you start having new symptoms after starting your HIV medicine. People taking ISENTRESS may still develop infections or other conditions associated with HIV infections. The most common side effects of ISENTRESS include: dizziness, headache, nausea, tiredness, and trouble sleeping. Less common side effects include: allergic reaction, depression, hepatitis, genital herpes, herpes zoster including shingles, kidney failure, kidney stones, stomach pain, suicidal thoughts and actions, vomiting, and weakness. Tell your doctor right away if you get unexplained muscle pain, tenderness, or weakness while taking ISENTRESS. This may be a sign of a rare but serious muscle problem that can lead to kidney problems.
Need help paying for ISENTRESS? Call 1-866-350-9232
Talk to your doctor about ISENTRESS and visit isentress.com Brands mentioned are the trademarks of their respective owners. Copyright ÂŠ 2013 Merck Sharp & Dohme Corp., a subsidiary of Merck & Co., Inc. All rights reserved. INFC-1049069-0004 07/13
Rash occurred more often in patients taking ISENTRESS and darunavir/ritonavir (Prezista) together, than with either drug separately, but was generally mild. These are not all the possible side effects of ISENTRESS. For more information, ask your doctor or pharmacist. Tell your doctor if you have any side effect that bothers you or that does not go away. Tell your doctor about all your medical conditions, including if you have any allergies, are pregnant or plan to become pregnant, or are breastfeeding or plan to breastfeed. ISENTRESS is not recommended for use during pregnancy. Women with HIV should not breastfeed because their babies could be infected with HIV through their breast milk. Tell your doctor about all the medicines you take, including: prescription medicines like rifampin (a medicine commonly used to treat tuberculosis), non-prescription medicines, vitamins, and herbal supplements. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call FDA at 1-800-FDA-1088. Please read the Patient Information on the adjacent page for more detailed information.
Patient Information ISENTRESS ® (eye sen tris) (raltegravir) Film-Coated Tablets Read this Patient Information before you start taking ISENTRESS and each time you get a refill. There may be new information. This information does not take the place of talking with your doctor about your medical condition or your treatment. What is ISENTRESS? ISENTRESS is a prescription HIV medicine used with other HIV medicines to treat adults with human immunodeficiency virus (HIV-1) infection. HIV is the virus that causes AIDS (Acquired Immune Deficiency Syndrome). When used with other HIV medicines, ISENTRESS may reduce the amount of HIV in your blood (called “viral load”). ISENTRESS may also help to increase the number of CD4 (T) cells in your blood which help fight off other infections. Reducing the amount of HIV and increasing the CD4 (T) cell count may improve your immune system. This may reduce your risk of death or infections that can happen when your immune system is weak (opportunistic infections). ISENTRESS does not cure HIV infection or AIDS. People taking ISENTRESS may still develop infections or other conditions associated with HIV infection. Some of these conditions are pneumonia, herpes virus infections, and Mycobacterium avium complex (MAC) infections. Patients must stay on continuous HIV therapy to control infection and decrease HIV-related illnesses. Avoid doing things that can spread HIV-1 infection to others: • Do not share 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 doctor if you have any questions on how to prevent passing HIV to other people. What should I tell my doctor before taking ISENTRESS? Before taking ISENTRESS, tell your doctor if you: • have liver problems. • have any other medical conditions. • are pregnant or plan to become pregnant. It is not known if ISENTRESS can harm your unborn baby. Pregnancy Registry: You and your doctor will need to decide if taking ISENTRESS is right for you. If you take ISENTRESS while you are pregnant, talk to your doctor about how you can be included in the Antiretroviral Pregnancy Registry. The purpose of the registry is to follow the health of you and your baby. • are breastfeeding or plan to breastfeed. - Do not breastfeed if you are taking ISENTRESS. You should not breastfeed if you have HIV because of the risk of passing HIV to your baby. - Talk with your doctor about the best way to feed your baby. Tell your doctor about all the medicines you take, including: prescription and nonprescription medicines, vitamins, and herbal supplements. Taking ISENTRESS and certain other medicines may affect each other causing serious side effects. ISENTRESS may affect the way other medicines work and other medicines may affect how ISENTRESS works. Especially tell your doctor if you take: • rifampin (Rifadin, Rifamate, Rifater, Rimactane), a medicine commonly used to treat tuberculosis. Ask your doctor or pharmacist if you are not sure whether any of your medicines are included in the list above. Know the medicines you take. Keep a list of them to show your doctor and pharmacist when you get a new medicine. Do not start any new medicines while you are taking ISENTRESS without first talking with your doctor. How should I take ISENTRESS? • Take ISENTRESS exactly as prescribed by your doctor. • You should stay under the care of your doctor while taking ISENTRESS. • Do not change your dose of ISENTRESS or stop your treatment without talking with your doctor first. • Take ISENTRESS by mouth, with or without food. • ISENTRESS Film-Coated Tablets must be swallowed whole. • If you miss a dose, take it as soon as you remember. If you do not remember until it is time for your next dose, skip the missed dose and go back to your regular schedule. Do not double your next dose or take more than your prescribed dose. • If you take too much ISENTRESS, call your doctor or go to the nearest emergency room right away. • Do not run out of ISENTRESS. Get your ISENTRESS refilled from your doctor or pharmacy before you run out. What are the possible side effects of ISENTRESS? ISENTRESS can cause serious side effects including: • Serious skin reactions and allergic reactions. Severe, potentially life-threatening and fatal skin reactions and allergic reactions have been reported in some patients taking ISENTRESS. If you develop a rash with any of the following symptoms, stop using ISENTRESS and contact your doctor right away: ° fever ° muscle or joint aches ° redness or swelling of the eyes ° generally ill feeling ° blisters or sores in mouth ° swelling of the mouth or face ° extreme tiredness ° blisters or peeling of the skin ° problems breathing Sometimes allergic reactions can affect body organs, like the liver. Contact your doctor right away if you have any of the following signs or symptoms of liver problems: ° yellowing of the skin or whites of the eyes ° dark or tea colored urine ° pale colored stools/bowel movements ° nausea/vomiting ° loss of appetite ° pain, aching or tenderness on the right side below the ribs
• 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. Tell your doctor right away if you start having new symptoms after starting your HIV medicine. The most common side effects of ISENTRESS include: • dizziness • tiredness • headache • trouble sleeping • nausea Less common side effects include: • allergic reaction • kidney failure • depression • kidney stones • genital herpes • stomach pain • hepatitis • suicidal thoughts and actions • herpes zoster • vomiting including shingles • weakness Tell your doctor right away if you get unexplained muscle pain, tenderness, or weakness while taking ISENTRESS. This may be a sign of a rare but serious muscle problem that can lead to kidney problems. Rash occurred more often in patients taking ISENTRESS and darunavir/ritonavir together than with either drug separately, but was generally mild. Tell your doctor if you have any side effect that bothers you or that does not go away. These are not all the possible side effects of ISENTRESS. For more information, ask your doctor or pharmacist. 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 ISENTRESS? Film-Coated Tablets: • Store ISENTRESS Film-Coated Tablets at room temperature between 68°F to 77°F (20°C to 25°C). Keep ISENTRESS and all medicines out of the reach of children. General information about ISENTRESS Medicines are sometimes prescribed for conditions that are not mentioned in Patient Information Leaflets. Do not use ISENTRESS for a condition for which it was not prescribed. Do not give ISENTRESS to other people, even if they have the same symptoms you have. It may harm them. This leaflet gives you the most important information about ISENTRESS. If you would like to know more, talk with your doctor. You can ask your doctor or pharmacist for information about ISENTRESS that is written for health professionals. For more information go to www.ISENTRESS.com or call 1-800-622-4477.
What are the ingredients in ISENTRESS? ISENTRESS Film-Coated Tablets: Active ingredient: raltegravir Inactive ingredients: microcrystalline cellulose, lactose monohydrate, calcium phosphate dibasic anhydrous, hypromellose 2208, poloxamer 407 (contains 0.01% butylated hydroxytoluene as antioxidant), sodium stearyl fumarate, magnesium stearate. The film coating contains: polyvinyl alcohol, titanium dioxide, polyethylene glycol 3350, talc, red iron oxide and black iron oxide. This Patient Information has been approved by the U.S. Food and Drug Administration. Distributed by: Merck Sharp & Dohme Corp., a subsidiary of Merck & Co., Inc. Whitehouse Station, NJ 08889, USA Revised July 2013 USPPI-0518-T-1306R022 Copyright © 2007, 2009, 2011 Merck Sharp & Dohme Corp., a subsidiary of Merck & Co., Inc. All rights reserved. INFC-1049069-0004 07/13 U.S. Patent Nos. US 7,169,780
Shining Light Recently, Walgreens received the third annual UnitedHealthcare “Shining Light: Leadership in Corporate Social Responsibility” award for making an impactful difference across communities.Walgreens has been committed to supporting the needs of individuals living with HIV/AIDS for more than thirty years, and that dedication has only grown over time. The pharmacy chain’s HIV Centers of Excellence program provides community-based support via 700 HIV-specialized pharmacies across the United States and Puerto Rico. Walgreens also supports organizations on the front line of the fight against AIDS. The award came with $25,000 to be donated to the award recipient’s charity of choice. Walgreens chose AIDS United, a D.C.-based national nonprofit that, according to its Web site, “combines strategic grantmaking and capacity-building with national advocacy and regional organizing to ensure access to life-saving HIV/AIDS care and prevention services and to advance sound HIV/AIDS related policy for U.S. populations and communities most impacted by the epidemic.” Last year, AIDS United provided more than $7 million in grants to help make a difference across 400 AIDS organizations in the U.S. Walgreens and AIDS United have an ongoing partnership. The pharmacy chain has been a regular funding partner of AIDS United’s Social Innovation Fund-supported Access to Care (A2C Initiative) since 2011. Access to Care helps to identify and dismantle barriers to care experienced by individuals living with HIV/AIDS. For more information, log on to www.walgreens.com/pharmacy/hiv-pharmacy-services and www.aidsunited.org.
photo courtesy Michael Kaplan/AIDS United
Sean Sasser Memorial Fund The new season of MTV’s The Real World is returning to San Francisco, the city that was the setting for the third season of the seven-strangers-live-in-a-house reality series airing back in 1994. That’s when the viewing public met Miamian Pedro Zamora, who was openly positive on the show, as well as Pedro’s boyfriend, Sean Sasser. Clockwise from top: Sean The two had met Sasser speaking at the at the March on White House in 1995; in Washington for the great outdoors; with Lesbian, Gay, and his husband, Michael Kaplan, in a poster for AIDS Bi Equal Rights Walk Portland, where and Liberation in 1993 and were they used to live reunited via the show in San Francisco, where Sean was trying to break into the restaurant business. It was perhaps the first time that television viewers got to know a young gay male couple in the age of AIDS. Through the documentation of their relationship, including one of the first-ever televised proposals and commitment ceremonies, the show countered the image of HIV-positive gay men as isolated from love and support and meekly resigned to a quiet existence rather than trying to forge a future together. Like Sean, Pedro was vocal about destigmatizing HIV/AIDS and promoting LGBT rights. Both Pedro and Sean had contracted HIV in their teens. Pedro died from AIDS-related complications in 1994 at age twenty-two. Sean was by his side till the end. In the real real world, Sean continued his LGBT and AIDS activism and educational efforts. He became a celebrated pastry chef, winning raves most recently for his stint at RIS restaurant in Washington, D.C., where he moved from Portland, Oregon, with his husband, Michael Kaplan, who last year started a tenure as president and CEO of D.C.-based AIDS United. On August 7, Sean Sasser, forty-four, died after briefly battling mesothelioma. He had been living with HIV for twenty-five years. He is survived by his husband, mother, and sister. A memorial fund has been set up at AIDS United to honor Sean’s life and legacy. Donations to the Sean Sasser Memorial Fund can be made by https://www.aidsunited.org/give. SEPTEMBER 2013 • A&U
Listening to Our Bodies
ur bodies are amazing creations. They even have a “language” all their own; signals—or synapses—from our brains that alert us to “danger” (pain or trauma) as well as pleasure. But often we ignore the “conversations” our bodies are trying to have with us. This is probably especially true for men who have been brought up to feel strong, untouchable, even omnipotent. I’ll never forget the night of November 23, 1993. My partner and I were cuddling on the couch in our bathrobes watching TV, sharing a pint of Häagen-Dazs Chocolate-Chocolate Chip ice cream, when the phone rang. Who would be calling just before Thanksgiving so late at night? Too comfortable on the couch, we let the answering machine pick-up the call. And my life was changed in an instant. “Chuck! Chuck! If you’re there, please pickup!!” my mother’s voice screamed. “Your dad is dead! He just dropped dead in the kitchen when he got home from his trip, and…” I jumped up and grabbed the phone, listening to my mother’s horrible account of my father’s unexpected, sudden death. He had simply dropped dead while talking on the phone with his five-year-old grandson after getting home that evening from a business trip. He was nibbling on a plate of food my mother sat in front of him as he chatted on the phone. How could my fiftyfive-year-old father—a former-Marine, former pro-football AND pro-baseball player—be dead? My father was one of “those men” who did not believe in seeing doctors regularly. In his mind, unless you had to literally drag yourself to an office or hospital, why bother? Whatever the problem was, it would just magically go away. His usually did as he was built like a bull,
and he had survived a number of injuries during his sports career, which just made his rationale worse. I don’t recall him ever having a “yearly check-up”— EVER! And when we found out that he had died from a brain aneurism that may
have been spotted and prevented had he listened to warning signs his body was screaming out at him, he might still be alive today. The apple, as they say, doesn’t always fall far from the tree. At the age of fifty-two, only three years younger than when my father died, and after being HIV-positive for at least twenty-five to thirty years, my “numbers” have all been good for a very long time. My viral load is undetectable, and my T-cell count is almost at 900! Despite suffering through some odd and new pains in various parts of my body, I certainly didn’t think there was anything to really worry about. I mean, what could possibly go wrong now? But for months I’ve suffered from intense migraines during the night, given every prescription medication which never provided any relief, and
then having to wrap my head in ice packs, making me look as though I was recovering from a badly botched facelift! I haven’t had a full-night’s sleep— literally—in months! Sharp, stabbing pains in my abdomen shortly followed, as well as pain in both testicles. I stupidly believed everything would “work itself out,” or it was a “side effect” to at least one or more of the truckload of medications I take every day. The bottom line, however, is that I was ignoring the screaming of my own body. I finally told my doctor about it all when I just couldn’t take all the pain anymore. In a calm, though firm tone, he asked, “Why haven’t you told me all of this before now?!” After examining me closely, he placed his hands on my bare knees, and said, “Chuck, we have some very serious problems here.” As I write this, I’m in the process of a series of MRIs, CT-scans, ultrasounds and biopsies. (Not to mention dealing with Medicare!!) The cancer that I thought I had beaten years ago appears to have returned, making its home in new places. My doctor told me that it’s “highly likely something is growing on or in my brain, and there could be other ‘trouble spots’ we need to find.” I didn’t listen. I ignored the symptoms, in the back of my own mind hoping for the best, but fearing the worst. And that’s why I didn’t do what I’ve always preached to others: listen to your body! Now my body is screaming so loudly I can’t hear anything else. I waited far too long, and I have no one to blame but myself. Chuck Willman has had poetry, essays, fiction, and erotica published or forthcoming in anthologies, journals, magazines, and e-books. Find some of his work on JMS-Books.com and Amazon.com. A&U • SEPTEMBER 2013
illustration by Timothy J. Haines
don’t ignore what your aches and pains might be “saying”!
WE WONâ€™T STOP SAturdAy, oct. 26, 2013 A fundraising walk & 5K timed run freedom pl A z A | 8:15 am 13th Street & pennsylvania Ave., NW
benefiting & produced by
aid s wa lkwashington.o rg
Hello, I have tried to send you a friend request after I sent this message because I thought I would ask you for permission to become your friend on Facebook. I really admire you as far as thework that you do for the HIV and gay community. I just wanted to share with you that I am a very closet-type person. I don’t know a lot of people, strictly by choice. I am gay—not DL (down low) or bisexual, but gay. Because of the lack of education that people have and their stupidity about it, I keep it to myself. July 22nd will make ten years for me being HIV-positive. Never have had to take medication, never have been hospitalized for it and that is a blessing. I have a personal issue about something and I know I can get an honest answer from you. Why is Magic Johnson the face of HIV or whenever they use somebody it’s always like that? Let me explain. Why does the media or news outlets never show the truth about HIV, you know, the having to take pills, and the going to the clinic, and being hospitalized. Why is the hardcore stuff never shown? Personally I think it would help if it was really shown how HIV breaks your body down. Well, thank you for your time. I really appreciate all that you do you. —DD
First let me say thank you so much for e-mailing me. Facebook will only allow a certain amount of friends per person (hint, hint: try looking up J.B. Terry-Smith). Well, I can see you have a loaded question that could have a lot of different answers. You have to take into consideration that Magic Johnson was one of the first professional athletes to come out and say that he was infected with the virus. In 1991 that was almost unheard of and it took a lot of bravery and courage to openly tell the public about his HIV status, especially being a celebrity and professional athlete. I believe he helped a lot of people in encouraging them to disclose their status or get tested or go for treatment. Johnson retired in the same year but came back to play in an All-Stars game in 1992. Now, twenty-two years after his HIV disclosure he has given his time and energy into raising money for HIV/ AIDS awareness. Also let me say to my other readers that just because he is still living doesn’t mean in any way, shape, or form he is free of HIV or cured. It just means he has taken care of himself and also has the money to do so. It is now 2013 and he is no longer “the face of HIV” in my opinion; anyone who is open with their status, not only to their partners, friends, and family but to the world, is “a face of HIV.” There is no one
specific person who could hold that title. That being said, celebrities and athletes are able to raise awareness of a disease a lot faster than people in the general population. People in the general population usually listen to people like Magic Johnson, Ellen, Don Lemon, Anderson Cooper, etc., because they are trusted spokespersons on issues that affect us all. Over time media outlets have shown people infected with HIV in the hospital, taking HIV medications, etc., but now we have YouTube where we ourselves can show the truth about HIV. I know on my YouTube channel I show all of those things. But that is only my truth about HIV, there are several others like myself, Robert Breining, Patrick Rio Kay, Mark S. King, Marvelyn Brown, Maria Mejia, Dab Garner, Jose Ramirez, Anthony Polimeni, Aaron Laxton, AJ King, etc., who are faces of HIV activism. We don’t have the money other (famous) spokespeople might have, or get the recognition we deserve, but our hearts are just as big if not bigger. We are all dedicated to eradicating this disease from our communities and from the earth. Now, my question to you, DD, and to the rest of my readers is: What are you doing to help fight HIV in your community? Keep on fighting the good fight and we will win the war. ◊ A&U • SEPTEMBER 2013
photo by Don Harris © Don Harris Photographics, LLC. all rights reserved
Justin B. Terry-Smith 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. Now, with this column, Justin has found a way to give voice to the issues that people write to him about. Visit his main Web site at www.justinbsmith.com. He welcomes your questions at firstname.lastname@example.org.
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f you’ve read my column with any regularity, you know that one of my pet escapes is the splendid Santa Ynez Valley. It’s a two-hour drive north of Los Angeles and along the way, the road frequently hugs the scenic Pacific coast. Think wine tasting, the Danish town of Solvang, the film Sideways, Michael Jackson’s Neverland, lavender fields, and calm, sloping hills dotted with horses and cows, weathered wood fences, and inviting oak trees. Storybook? This time I had a treat in store for me. I cuddled up at the Santa Ynez Valley Marriott, an environmentally green hotel, which has class and panache. They offer free Wi-Fi, a fitness room, a spa, and an outdoor swimming pool. The staff is outgoing and helpful, especially the front desk attendant, Yolanda Juarez, and the houseman, Jonathan Casique. He went that extra mile to see that this dame was comfy and settled. The Marriott has an interest in many altruistic efforts, and in October they will sponsor the first “Miracles Happen” Charity Golf Tournament to benefit Children’s Miracle Network and People Helping People Children’s Health Service. I also encountered another miracle while here. It happened after a tasty late dinner at the hotel’s Starting Gate restaurant. I meandered outdoors to the sprawling lounge area that’s endowed with an amorous-sparking fireplace. Hypnotically staring into the pit, I hear a gracious voice call out, “I love your energy. You lit the place up when you walked in so I just had to introduce myself.” Weeeell…! The voice belonged to Mike
Hennessey, who calls himself Miracle Mike. I was hoping it was a come-on line; however, Mike has been happily hitched for ten years with husband Bob. Mike, a Woburn, Massachusetts, native, is a comic, kid’s birthday mystery entertainer (with an impressive celebrity client list), director, speaker, songwriter (“The Butterfly Dance”), and author (Original Mystery Party Handbook, and a portion of its proceeds goes toward charity). He calls himself a miracle because of his victory over AIDS. He was diagnosed HIV-positive in 1990, and was told he had about nine years to live. In 1997 he acquired what was known then as full-blown AIDS, probably due, in large part, to the grief of losing his beloved mother, Ellen Sue, his inspiration. He has lived with HIV for nearly fifteen years and practically died thirteen times! It wasn’t until 2011 that he overcame the AIDS diagnosis. Mike has been featured on FOX News, Sheena Metal’s LA Talk Radio, and POZ I AM Radio Show. Mike has lost around fifty friends to the epidemic and most of his life has been dedicated to helping those less fortunate, including victims of the Japanese earthquake, Hurricane Sandy, and the Sandy Hook Connecticut Elementary School shooting. He established a Web site, www.onecan.org, to aid homeless shelters that encourage people to donate money earned from recycling cans and bottles. Since 2005, the inception of Saddle Up LA, Mike has hosted the annual AIDS fundraiser. Mike has his fingers in many pies, even appearing earlier this year on TV’s Let’s Make a Deal. Huddling around the open
pit with Mike for a few fascinating hours, the man has the gleam of a kid on Christmas morning and approaches life like a student passionately absorbed in a science project— with wonderment and curiosity. Ruby Comer: My dear, where does your passion and zest for life come from? It’s infectious…. Mike Hennessey: It comes from my gratitude and gratefulness that I have one more day to shine my light in this world. Each extra day I have on this beautiful planet to teach and make believe with the hundreds of thousands of children makes my heart jump for joy. Plus, waking up with my beautiful husband next to me every day makes me giddy. He supports all of my dreams no matter how crazy and “out there” they may seem. He’s my biggest cheerleader. [He casts his baby blues downward and utters] I’m seriously on the verge of tears just thinking about this beautiful man that I am so blessed to have in my life…. How wonderful, you guys. So how did your
ruby illustration by Davidd Batalon; clown photo courtesy Mike Hennessy; photo by Scotty Martin
A&U • SEPTEMBER 2013
career entertaining kids begin? By performing characters like Barney, Power Rangers, and Mickey Mouse. From there, my client list began to grow. I then expanded my repertoire to include mystery theater. In the past sixteen years I’ve performed at more than 10,000 children’s birthday parties for 300,000 children. Each show is original. I tailor the mystery to the setting, which is usually the home of the birthday boy or girl. My passion has always been working with children. They’re my best audience. And who have been your favorite celebrity clients? Dee Wallace, Michelle Pfeiffer, and Rainn Wilson.
me was changing my story—plain and simple! I originally stated, emphatically, that I had AIDS. But when I started declaring that “I am healing from AIDS,” things began to shift in my life in remarkable ways, healthwise. I believe in this 1,000 percent! The power of our words…our thoughts…. That’s one lesson I continually need to be reminded of. Thank you! So what’s your advice to a newly HIV-positive diagnosed person? Don’t take your diagnosis so seriously. Don’t let it consume every waking moment. Life is what you make of it; not what the
infected and affected by HIV and AIDS and with the help of her extraordinary volunteers, she brings hope to people struggling with this disease in all of its different stages. Sunnie is a special lady. Has anything bugged you over the years about being HIV-positive? Being despised and judged by those in the “negative camp,” especially when I was on the dating scene. I mean, don’t negative guys know that poz guys make the best lovers? Hey, that could be a bumper sticker?! [He glances briefly upward at the starry night.] Early on, it saddened me about the lack of support among my own kind. Most support came from straight and gay friends who were already in my life.
photo courtesy Marriott
I loved Dee as the mother in E.T.! When did you first hear about the epidemic? I really didn’t hear about it until I went to Bible College in the fall of ’83. The founder would screech from the pulpit about the “faggots dying from AIDS!” and “they’re getting what they deserve.” His words still haunt me.
Intriguing comment. Where did your zeal to volunteer come from? It started when I was a child growing up in the projects on welfare just outside of Boston. Volunteers would come to the projects to make small differences in people’s lives. They inspired me to do little things like helping elderly neighbors with their chores or selling things to raise money for causes or just sitting and listening to a friend Fahcrissake! [We both who was having a hard time. At shake our heads in fifteen I started volunteering in unison.] Tell me about one The lobby of the Santa Ynez Valley Marriott, which will sponsor nursing homes and it just took off the first “Miracles Happen” Charity Golf Tournament to benefit of your friends who died of Children’s Miracle Network and People Helping People Children’s from there. Those project volunteers AIDS-related complications. made me feel like the whole world Health Services in October. [He ponders a moment.] hadn’t abandoned me. They had a Juan, a sweet friend of huge impact on my life and I am mine…we met at a remarkforever grateful. When I worked in finance doctors say or what the negative religious able HIV support group in the mid-ninein 1988, I actually took a month off to help people say. You have the choice to have the ties in Los Angeles. He was covered with with the Boston AIDS Walk. most extraordinary life if you choose to. Stay Kaposi’s sarcoma and so embarrassed centered and focused on living a healthy life— about it. I would take him to a gay church You seem to put smiles on other’s faces. What physically, emotionally, and spiritually. in the [San Fernando] Valley on Sundays. makes Miracle Mike happy? Connect immediately with a positive (pun He loved it! He attended until he could I have had the most extraordinary life! Not intended) group or organization that offers a barely walk. I remember spending his last despite AIDS, but because of AIDS. plethora of services and counseling. And for days with him at the hospital with his famI took my lemons and made lemonade ily. They were so grateful for my friendship me, it helped to find someone to talk to in my for all the people that I’ve met—because I peer circle who had been living with the disand kindness to him when others thought had AIDS. Otherwise, I would still be living ease for a number of years. My peer, Michael he was a burden. a mediocre life working in the North End Smith, may he rest in peace, changed my life. I cherished Juan’s friendship and his of Boston. But in the end, I’ve worked with He even encouraged me to make the move to bravery. He knew he was going to die countless celebrities and non-celebrities Los Angeles so many years ago. There should and I wished I could have just waved my who have all changed my life forever, and it be more HIV “mentoring” going on…. hands over him and magically make all of would never have happened if I had not emhis lesions disappear. He was a beautiful braced AIDS as the gift that it truly can be. Yessir! Who do you consider to be a hero in gift; an angel who I know still watches the epidemic? over me today. Clown around more with Mike by logging on to: How about a heroine?! Aside from the www.IamMiracleMike.com. famous ones like Ellen DeGeneres, Elizabeth We all should have an angel like Juan perched on Taylor [A&U, February 2003] and others, I our shoulder! How is your health today, Mike? Ruby Comer is an independent journalist from would have to say Sunnie Rose Berger, the Very good. I’m on the basic cocktail—I don’t the Midwest who is happy to call Hollywood her founder of The Life Group LA. [I nod in agree- home away from home. Reach her by e-mail at drink, so I call it a milkshake!—Prezista, Norvir, Truvada, and Viramune. But the real key for ment.] She created a safe place for people MsRubyComer@aol.com. SEPTEMBER 2013 • A&U
Patient model. Pill shown is not actual size.
What is COMPLERA? COMPLERA is a prescription HIV medicine that is used as a complete regimen to treat HIV-1 in adults who have never taken HIV medicines before and who have an amount of HIV in their blood (this is called “viral load”) that is no more than 100,000 copies/mL. COMPLERA contains 3 medicines – rilpivirine, emtricitabine and tenofovir disoproxil fumarate. It is not known if COMPLERA is safe and effective in children under the age of 18 years. ®
COMPLERA® does not cure HIV-1 infection or AIDS. To control HIV-1 infection and decrease HIV-related illnesses you must keep taking COMPLERA. Avoid doing things that can spread 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, do not share personal items that may contain bodily fluids. Ask your healthcare provider if you have questions about how to reduce the risk of passing HIV-1 to others.
IMPORTANT SAFETY INFORMATION What is the most important information you should know about COMPLERA? COMPLERA® can cause serious side effects: • Build-up of an acid in your blood (lactic acidosis), which is a serious medical emergency. Symptoms of lactic acidosis include feeling very weak or tired, unusual (not normal) muscle pain, trouble breathing, stomach pain with nausea or vomiting, feeling cold, especially in your arms and legs, feeling dizzy or lightheaded, and/or a fast or irregular heartbeat. • Serious liver problems. The liver may become large (hepatomegaly) and fatty (steatosis). Symptoms of liver problems include your skin or the white part of your eyes turns yellow (jaundice), dark “tea-colored” urine, light-colored bowel movements (stools), loss of appetite for several days or longer, nausea, and/or stomach pain. • You may be more likely to get lactic acidosis or serious liver problems if you are female, very overweight (obese), or have been taking COMPLERA for a long time. In some cases, these serious conditions have led to death. Call your healthcare provider right away if you have any symptoms of these conditions. • Worsening of hepatitis B (HBV) infection. If you also have HBV and stop taking COMPLERA, your hepatitis may suddenly get worse. Do not stop taking COMPLERA without first talking to your healthcare provider, as they will need to monitor your health. COMPLERA is not approved for the treatment of HBV.
Who should not take COMPLERA? Do not take COMPLERA if you have ever taken other anti-HIV medicines. COMPLERA may change the effect of other medicines and may cause serious side effects. Your healthcare provider may change your other medicines or change their doses. Do not take COMPLERA if you also take these medicines: • anti-seizure medicines: carbamazepine (Carbatrol, Equetro, Tegretol, Tegretol-XR, Teril, Epitol); oxcarbazepine (Trileptal), phenobarbital (Luminal), phenytoin (Dilantin, Dilantin-125, Phenytek) • anti-tuberculosis medicines: rifabutin (Mycobutin), rifampin (Rifater, Rifamate, Rimactane, Rifadin) and rifapentine (Priftin) • proton pump inhibitors for stomach or intestinal problems: esomeprazole (Nexium, Vimovo), lansoprazole (Prevacid), dexlansoprazole (Dexilant), omeprazole (Prilosec), pantoprazole sodium (Protonix), rabeprazole (Aciphex) • more than 1 dose of the steroid medicine dexamethasone or dexamethasone sodium phosphate • St. John’s wort (Hypericum perforatum) If you are taking COMPLERA you should not take other HIV medicines or other medicines containing tenofovir (Viread, Truvada, Stribild or Atripla); other medicines containing emtricitabine or lamivudine (Emtriva, Combivir, Epivir, Epivir-HBV, Epzicom, Trizivir, Atripla, Stribild or Truvada); rilpivirine (Edurant) or adefovir (Hepsera). In addition, tell your healthcare provider if you are taking the following medications because they may interfere with how COMPLERA works and may cause side effects: • certain antacid medicines containing aluminum, magnesium hydroxide, or calcium carbonate (examples: Rolaids, TUMS). These medicines must be taken at least 2 hours before or 4 hours after COMPLERA. • medicines to block stomach acid including cimetidine (Tagamet), famotidine (Pepcid), nizatidine (Axid), or ranitidine HCL (Zantac). These medicines must be taken at least 12 hours before or 4 hours after COMPLERA. • any of these medicines: clarithromycin (Biaxin); erythromycin (E-Mycin, Eryc, Ery-Tab, PCE, Pediazole, Ilosone), fluconazole (Diflucan), itraconazole (Sporanox), ketoconazole (Nizoral) methadone (Dolophine); posaconazole (Noxafil), telithromycin (Ketek) or voriconazole (Vfend). • medicines that are eliminated by the kidneys like acyclovir (Zovirax), cidofovir (Vistide), ganciclovir (Cytovene IV, Vitrasert), valacyclovir (Valtrex) and valganciclovir (Valcyte).
A complete HIV treatment in only 1 pill a day. COMPLERA is for adults who have never taken HIV-1 medicines before and have no more than 100,000 copies/mL of virus in their blood.
Ask your healthcare provider if it’s the one for you.
These are not all the medicines that may cause problems if you take COMPLERA. Tell your healthcare provider about all prescription and nonprescription medicines, vitamins, or herbal supplements you are taking or plan to take.
The most common side effects reported with COMPLERA are trouble sleeping (insomnia), abnormal dreams, headache, dizziness, diarrhea, nausea, rash, tiredness, and depression. Some side effects also reported include vomiting, stomach pain or discomfort, skin discoloration (small spots or freckles) and pain.
Before taking COMPLERA, tell your healthcare provider if you: liver problems, including hepatitis B or C virus infection, or have abnormal liver tests • Have kidney problems • Have ever had a mental health problem • Have bone problems • Are pregnant or planning to become pregnant. It is not known if COMPLERA can harm your unborn child • Are breastfeeding: Women with HIV should not breastfeed because they can pass HIV through their milk to the baby. Also, COMPLERA may pass through breast milk and could cause harm to the baby
This is not a complete list of side effects. Tell your healthcare provider or pharmacist if you notice any side effects while taking COMPLERA, and call your healthcare provider for medical advice about side effects.
COMPLERA can cause additional serious side effects: or worsening kidney problems, including kidney failure. If you have had kidney problems, or take other medicines that may cause kidney problems, your healthcare provider may need to do regular blood tests. • Depression or mood changes. Tell your healthcare provider right away if you have any of the following symptoms: feeling sad or hopeless, feeling anxious or restless, have thoughts of hurting yourself (suicide) or have tried to hurt yourself. • Changes in liver enzymes: People who have had hepatitis B or C, or who have had changes in their liver function tests in the past may have an increased risk for liver problems while taking COMPLERA. Some people without prior liver disease may also be at risk. Your healthcare provider may need to check your liver enzymes before and during treatment with COMPLERA. • Bone problems can happen in some people who take COMPLERA. Bone problems include bone pain, softening or thinning (which may lead to fractures). Your healthcare provider may need to do additional tests to check your bones. • Changes in body fat can happen in people taking HIV medicine. • Changes in your immune system. Your immune system may get stronger and begin to fight infections that have been hidden in your body for a long time. Tell your healthcare provider if you start having new symptoms after starting COMPLERA. • New
You are encouraged to report negative side effects of prescription drugs to the FDA. Visit http://www.fda.gov/medwatch or call 1-800-FDA-1088. Additional Information about taking COMPLERA: • Always take COMPLERA exactly as your healthcare provider tells you to take it. • Take COMPLERA with food. Taking COMPLERA with food is important to help get the right amount of medicine in your body. (A protein drink does not replace food. If your healthcare provider stops COMPLERA, make certain you understand how to take your new medicine and whether you need to take your new medicine with a meal.) Stay under the care of your healthcare provider during treatment with COMPLERA and see your healthcare provider regularly. Please see Brief Summary of full Prescribing Information with important warnings on the following pages.
Learn more at www.COMPLERA.com
Brief Summary of full Prescribing Information
COMPLERA (kom-PLEH-rah) (emtricitabine, rilpivirine, tenofovir disoproxil fumarate) tablets ®
Brief summary of full Prescribing Information. For more information, please see the full Prescribing Information including Patient Information. What is COMPLERA? •
COMPLERA is a prescription HIV (Human Immunodeficiency Virus) medicine that is used to treat HIV-1 in adults – who have never taken HIV medicines before, and – who have an amount of HIV in their blood (this is called ‘viral load’) that is no more than 100,000 copies/mL. Your healthcare provider will measure your viral load.
(HIV is the virus that causes AIDS (Acquired Immunodeficiency Syndrome)). •
COMPLERA contains 3 medicines – rilpivirine, emtricitabine, tenofovir disoproxil fumarate – combined in one tablet. It is a complete regimen to treat HIV-1 infection and should not be used with other HIV medicines.
It is not known if COMPLERA is safe and effective in children under the age of 18 years old.
COMPLERA does not cure HIV infection or AIDS. You must stay on continuous therapy to control HIV infection and decrease HIV-related illnesses.
Ask your healthcare provider if you have any questions about how to prevent passing HIV to other people. Do not share or re-use needles or other injection equipment, and do not share personal items that can have blood or body fluids on them, like toothbrushes and razor blades. Always practice safer sex by using a latex or polyurethane condom to lower the chance of sexual contact with semen, vaginal fluids or blood.
Who should not take COMPLERA? Do not take COMPLERA if: • your HIV infection has been previously treated with HIV medicines. •
you are taking any of the following medicines: – anti-seizure medicines: carbamazepine (Carbatrol, Equetro, Tegretol, Tegretol-XR, Teril, Epitol); oxcarbazepine (Trileptal); phenobarbital (Luminal); phenytoin (Dilantin, Dilantin-125, Phenytek) – anti-tuberculosis (anti-TB) medicines: rifabutin (Mycobutin); rifampin (Rifater, Rifamate, Rimactane, Rifadin); rifapentine (Priftin) – proton pump inhibitor (PPI) medicine for certain stomach or intestinal problems: esomeprazole (Nexium, Vimovo); lansoprazole (Prevacid); dexlansoprazole (Dexilant); omeprazole (Prilosec, Zegerid); pantoprazole sodium (Protonix); rabeprazole (Aciphex) – more than 1 dose of the steroid medicine dexamethasone or dexamethasone sodium phosphate – St. John’s wort (Hypericum perforatum)
If you take COMPLERA, you should not take: – Other medicines that contain tenofovir (Atripla, Stribild, Truvada, Viread)
What is the most important information I should know about COMPLERA? COMPLERA can cause serious side effects, including: • Build-up of an acid in your blood (lactic acidosis). Lactic acidosis can happen in some people who take COMPLERA or similar (nucleoside analogs) medicines. Lactic acidosis is a serious medical emergency that can lead to death. Lactic acidosis can be hard to identify early, because the symptoms could seem like symptoms of other health problems. Call your healthcare provider right away if you get any of the following symptoms which could be signs of lactic acidosis: – feel very weak or tired – have unusual (not normal) muscle pain – have trouble breathing – have stomach pain with nausea (feeling sick to your stomach) or vomiting – feel cold, especially in your arms and legs
– Other medicines that contain emtricitabine or lamivudine (Combivir, Emtriva, Epivir or Epivir-HBV, Epzicom, Trizivir, Atripla, Truvada, Stribild) – rilpivirine (Edurant) – adefovir (Hepsera) What should I tell my healthcare provider before taking COMPLERA? Before you take COMPLERA, tell your healthcare provider if you: • have or had liver problems, including hepatitis B or C virus infection, kidney problems, mental health problem or bone problems •
– feel dizzy or lightheaded Severe liver problems. Severe liver problems can happen in people who take COMPLERA. In some cases, these liver problems can lead to death. Your liver may become large (hepatomegaly) and you may develop fat in your liver (steatosis). Call your healthcare provider right away if you get any of the following symptoms of liver problems:
– your skin or the white part of your eyes turns yellow (jaundice) – dark “tea-colored” urine – light-colored bowel movements (stools)
are breast-feeding or plan to breast-feed. You should not breastfeed if you have HIV because of the risk of passing HIV to your baby. Do not breastfeed if you are taking COMPLERA. At least two of the medicines contained in COMPLERA can be passed to your baby in your breast milk. We do not know whether this could harm your baby. Talk to your healthcare provider about the best way to feed your baby.
– loss of appetite for several days or longer
Tell your healthcare provider about all the medicines you take, including prescription and nonprescription medicines, vitamins, and herbal supplements.
– stomach pain •
are pregnant or plan to become pregnant. It is not known if COMPLERA can harm your unborn child. Pregnancy Registry. There is a pregnancy registry for women who take antiviral medicines during pregnancy. The purpose of this registry is to collect information about the health of you and your baby. Talk to your healthcare provider about how you can take part in this registry.
– have a fast or irregular heartbeat •
Worsening of Hepatitis B infection. If you have hepatitis B virus (HBV) infection and take COMPLERA, your HBV may get worse (flare-up) if you stop taking COMPLERA. A “flare-up” is when your HBV infection suddenly returns in a worse way than before. COMPLERA is not approved for the treatment of HBV, so you must discuss your HBV with your healthcare provider. – Do not let your COMPLERA run out. Refill your prescription or talk to your healthcare provider before your COMPLERA is all gone. – Do not stop taking COMPLERA without first talking to your healthcare provider. – If you stop taking COMPLERA, your healthcare provider will need to check your health often and do blood tests regularly to check your HBV infection. Tell your healthcare provider about any new or unusual symptoms you may have after you stop taking COMPLERA.
You may be more likely to get lactic acidosis or severe liver problems if you are female, very overweight (obese), or have been taking COMPLERA for a long time.
COMPLERA may affect the way other medicines work, and other medicines may affect how COMPLERA works, and may cause serious side effects. If you take certain medicines with COMPLERA, the amount of COMPLERA in your body may be too low and it may not work to help control your HIV infection. The HIV virus in your body may become resistant to COMPLERA or other HIV medicines that are like it.
Especially tell your healthcare provider if you take: an antacid medicine that contains aluminum, magnesium hydroxide, or calcium carbonate. If you take an antacid during treatment with COMPLERA, take the antacid at least 2 hours before or at least 4 hours after you take COMPLERA.
trouble sleeping (insomnia)
any of these medicines (if taken by mouth or injection):
– clarithromycin (Biaxin)
a medicine to block the acid in your stomach, including cimetidine (Tagamet), famotidine (Pepcid), nizatidine (Axid), or ranitidine hydrochloride (Zantac). If you take one of these medicines during treatment with COMPLERA, take the acid blocker at least 12 hours before or at least 4 hours after you take COMPLERA.
– erythromycin (E-Mycin, Eryc, Ery-Tab, PCE, Pediazole, Ilosone)
Additional common side effects include:
– fluconazole (Diflucan)
– itraconazole (Sporanox)
stomach pain or discomfort
– ketoconazole (Nizoral)
skin discoloration (small spots or freckles)
– methadone (Dolophine)
– posaconazole (Noxafil) – telithromycin (Ketek) – voriconazole (Vfend) •
The most common side effects of COMPLERA include: •
medicines that are eliminated by the kidney, including acyclovir (Zovirax), cidofovir (Vistide), ganciclovir (Cytovene IV, Vitrasert), valacyclovir (Valtrex), and valganciclovir (Valcyte)
What are the possible side effects of COMPLERA? COMPLERA can cause serious side effects, including: • See “What is the most important information I should know about COMPLERA?” •
New or worse kidney problems, including kidney failure, can happen in some people who take COMPLERA. Your healthcare provider should do blood tests to check your kidneys before starting treatment with COMPLERA. If you have had kidney problems in the past or need to take another medicine that can cause kidney problems, your healthcare provider may need to do blood tests to check your kidneys during your treatment with COMPLERA.
Depression or mood changes. Tell your healthcare provider right away if you have any of the following symptoms: – feeling sad or hopeless
Tell your healthcare provider if you have any side effect that bothers you or that does not go away. These are not all the possible side effects of COMPLERA. For more information, ask your healthcare provider or pharmacist. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088 (1-800-332-1088). How should I take COMPLERA? •
Stay under the care of your healthcare provider during treatment with COMPLERA.
Take COMPLERA exactly as your healthcare provider tells you to take it.
Always take COMPLERA with food. Taking COMPLERA with food is important to help get the right amount of medicine in your body. A protein drink is not a substitute for food. If your healthcare provider decides to stop COMPLERA and you are switched to new medicines to treat HIV that includes rilpivirine tablets, the rilpivirine tablets should be taken only with a meal.
Do not change your dose or stop taking COMPLERA without first talking with your healthcare provider. See your healthcare provider regularly while taking COMPLERA.
If you miss a dose of COMPLERA within 12 hours of the time you usually take it, take your dose of COMPLERA with food as soon as possible. Then, take your next dose of COMPLERA at the regularly scheduled time. If you miss a dose of COMPLERA by more than 12 hours of the time you usually take it, wait and then take the next dose of COMPLERA at the regularly scheduled time.
Do not take more than your prescribed dose to make up for a missed dose.
– feeling anxious or restless – have thoughts of hurting yourself (suicide) or have tried to hurt yourself •
Change in liver enzymes. People with a history of hepatitis B or C virus infection or who have certain liver enzyme changes may have an increased risk of developing new or worsening liver problems during treatment with COMPLERA. Liver problems can also happen during treatment with COMPLERA in people without a history of liver disease. Your healthcare provider may need to do tests to check your liver enzymes before and during treatment with COMPLERA.
Bone problems can happen in some people who take COMPLERA. Bone problems include bone pain, softening or thinning (which may lead to fractures). Your healthcare provider may need to do additional tests to check your bones.
Changes in body fat can happen in people taking HIV medicine. These changes may include increased amount of fat in the upper back and neck (“buffalo hump”), breast, and around the main part of your body (trunk). Loss of fat from the legs, arms and face may also happen. The cause and long term health effect of these conditions are not known.
Changes in your immune system (Immune Reconstitution Syndrome) can happen when you start taking HIV medicines. Your immune system may get stronger and begin to fight infections that have been hidden in your body for a long time. Tell your healthcare provider if you start having new symptoms after starting your HIV medicine.
This Brief Summary summarizes the most important information about COMPLERA. If you would like more information, talk with your healthcare provider. You can also ask your healthcare provider or pharmacist for information about COMPLERA that is written for health professionals, or call 1-800-445-3235 or go to www.COMPLERA.com Issued: June 2013
COMPLERA, the COMPLERA Logo, EMTRIVA, GILEAD, the GILEAD Logo, GSI, HEPSERA, STRIBILD, TRUVADA, VIREAD, and VISTIDE are trademarks of Gilead Sciences, Inc., or its related companies. ATRIPLA is a trademark of Bristol-Myers Squibb & Gilead Sciences, LLC. All other marks referenced herein are the property of their respective owners. ©2013 Gilead Sciences, Inc. All rights reserved. CPAC0041 07/13
Somebody hid a razorblade in the shag carpeting at school. Jake Graham hammered bamboo spears behind blood-orange fingernails, and bound my wrists in velvet ropes. This was nothing compared to those 15 minutes. I was no more than a stalk of sugarcane when I first got tested. Mother’s face was a cantaloupe, halved: a mess of irate, toothy seeds glued in egg yolk viscera. She played bridge with the admin outside, and I assumed cantaloupe skin. In 15 minutes, you can sing Janet’s “Let’s Wait Awhile” 3.4 times. I was a Vietnamese rumble fish, in a pot set to boil, frantically warbling my abstinence anthem. —Tyler Dennis
Tyler Dennis is a twenty-two-year-old senior at the University of Alabama at Birmingham. When he’s not cooking pizzas at his place of employment, he’s reading and writing as much as he can. This poem was first runner-up in A&U’s Christopher Hewitt Award literary contest.
A&U • SEPTEMBER 2013
All Good Things
are we nearer the day when the Nell Warren promise of a vaccine will outweigh
here’s an old saying, “All good things must come to an end.” Writing this column for A&U has been a good thing for a decade and a half now. I’ve had the opportunity to explore the ins and outs of AIDS politics, not only in the U.S. but other countries as well. But other priorities are calling, and I need to make room for them in my life. Over the years, I’ve met some extraordinary people through the column—including giants of activism like the late José Fernando Colón and his surviving partner Anselmo Fonseca, who founded Pacientes de SIDA Pro Política Sana in order to battle corruption in the AIDS delivery system in Puerto Rico. Most notably, the column brought me into contact with Texas scientist Joseph Cotropia, MD, co-founder with his attorney brother Charles Cotropia of BioClonetics Immunotherapeutics, Inc., a privately held biotech. I also met their CFO, Paul Fellegy. Connecting with BioClonetics was a six-degrees-of-separation thing. Around six years ago, an HIV-positive gay male friend of theirs was sitting in his doctor’s waiting room and picked up a copy of A&U from the coffee table there. Flipping the pages, he ran across a Left Field. As an admirer of my novels, he was surprised to see that I had taken up nonfiction reporting. After his appointment, he raced to tell Dr. Cotropia and Paul, “Guess who’s writing about AIDS vaccines!”
Next thing, Paul called me on the phone. This was the first of many calls, and eventually meetings, as he and Dr. Cotropia told me the strange story of their frustrating (so far) search for financing of clinical trials. After many years of research, Cotropia had discovered a human monoclonal antibody that has a powerful potential for neutralizing HIV strains in a vaccine. To put it simply, Cotropia discovered a human cell line producing a specific human antibody that targets a genetic sequence designated KLIC on the surface of HIV’s outer envelope. Dr. Cotropia named it Clone 3. This antibody can lock onto the KLIC epitope (the epitope is a key spot on the envelope where the virus is vulnerable to antibody action) in such a way that the virus is unable to reproduce, and ultimately cannot infect a human cell. Cotropia patented his discovery in 1989. My column had already been reporting on vaccine research…and on the mounting record of failures. Most spectacular, back in 2003, was the furor around VaxGen and its AIDSVAX. This vaccine was supposedly designed to spark antibodies to gp120, a protein found in the surface of HIV viruses. Previous research along this line had not looked promising. But VaxGen pulled political strings and the AIDSVAX trial got funded, including a healthy grant by the CDC. And indeed, in early 2003, the first clinical reports revealed that AIDSVAX was a dud. Since that first call from Fellegy, I’ve had ample opportunity to look at the science around Clone 3, as well as observe the political antics around it. Though NIH had funded one of the initial studies of Clone 3, in 2004 the agency said no to funding a Phase I clinical trial. “Lack of innovation,” the NIH reviewers sniffed. Stranger still—in 1999, the government had made a patent application that overlapped
an area covered by Dr. Cotropia’s 1989 patents. The government listed NIAID director Anthony Fauci and others as the “inventors.” In the affidavit required by the filing process, Fauci, et al., declared under oath that the neutralizing technology in question had “utility” and “commercial value.” But the U.S. Patent Examiner threw out the government’s bid to own the key area covering Clone 3. He pointed out that Dr. Cotropia and BioClonetics had a prior claim. So if Clone 3 had “commercial value” according to Fauci himself, why was the discovery viewed by others as lacking “innovation?” Talking heads in the AIDS industry, including Fauci himself, have said that the best way to end the AIDS epidemic is an effective AIDS vaccine. Just recently, Fauci discussed the current effort to intensify conventional drug treatment globally, but wrote in conclusion, “An effective HIV vaccine would get us to an AIDS-free generation faster and, more important, help sustain that accomplishment.” Other antibodies, and other vaccine approaches, have been granted their chance at clinical trials. So far, all have failed to deliver real promise. Then, in August 2010, came another landmark for Clone 3. The U.S. government’s Los Alamos HIV Clinical Database published a review of Clone 3 antibody’s capacity to bind directly with the 2,229 (then) known strains of HIV around the world. By searching the surface (amino acid) composition of these 2,229 HIV isolates, Los Alamos found that continued on page 62 A&U • SEPTEMBER 2013
photo by Stephen Churchill Downes; illustration by Timothy J. Haines
profits & politics?
Old Facing AIDS a growing body of research shows age-related diseases for those with hiv by Larry Buhl
he face of HIV, now in its early thirties, is getting old. By 2015, the average age of an HIV patient in the United States will be fifty, according to the Centers for Disease Control and Prevention. The CDC also says that right now, a third of the nearly 1.2 million people living with HIV in the U.S. are over fifty years-old, and by 2020 half will be over fifty. Even in sub-Saharan Africa, home to most of the world’s HIV-infected population, studies suggest 3 million people living with HIV are over fifty. Dr. Joel Negin of the University of Sydney in Australia told attendees at this year’s International AIDS Conference that by 2040 that number could reach 9 million. Those figures are the best news the scientific community could hope for, short of a cure that eliminates HIV completely. An aging group of HIV-positive people means the medications and treatments are working in prolonging lives. But what’s not so clear is, once the lives are lengthened, how well can the body stand living with the virus (and the meds). Until very recently there has been little data on the long-term effects of HIV, and the therapies to keep it in check, twenty, thirty or forty years after the initial infection. The research so far suggests HIV-positive people may suppress the virus only to succumb to diseases normally associated with old age—many years younger than they ordinarily would. HIV survival and new health risks For the first years that therapies like protease inhibitors and other antiretrovirals began helping people live longer with HIV, the bulk of the research and treatment was on the virus itself: How do the meds reduce the viral load and increase T cells? Now that it’s clear that the meds have made manageable what was an exclusively deadly disease, a growing field of research is exploring how the human body copes with the virus, even when it’s kept at undetectable levels. The results so far suggest that even when HIV is kept in check, it’s still
doing damage, even if it isn’t clear why. Two of the first wave of studies to look at the health effects of HIV-positive people as they age were described in the December 2011 issue of Clinical Infectious Diseases. An Italian study showed that HIV-positive people were more likely to have multiple health problems at an earlier age. In that same issue, a Swiss study showed that HIV-positive people, over time, had a higher rate of non-AIDS-related conditions including cardiovascular disease, cancer, bone loss, and diabetes. The Italian study compared risk factors for non-infectious co-morbidities in a cohort of 2,854 HIV-positive adults receiving antiretroviral therapy (ART) at Modena University during 2002–2009, and 8,562 matched control subjects in an Italian general population database. Just under two-thirds were men, the average age was forty-six years, and HIV-positive patients had been on ART for an average of about ten years. This case-control analysis looked at age-related non-infectious conditions including cardiovascular disease, hypertension (high blood pressure), diabetes, bone fractures, and kidney failure; because these conditions are not caused by infectious pathogens, they are not directly linked to immune function (CD4 T-cell count) and are considered non-AIDS related. Researchers found that co-morbidity was significantly higher among HIV-positive patients compared with HIV-negative controls and that prevalence of hypertension, cardiovascular disease, diabetes, kidney failure and bone fractures among HIV-positive people in their forties was similar to that of HIV-negative control subjects in their fifties. The study did not conclude why the bodies of people with HIV were in some ways, but not others, ten years “older” than people without HIV. The researchers did have a recommendation: an aggressive approach to the screening, diagnosis, and treatment of non-infectious co-morbidities as part of routine healthcare for HIV-infected patients. They added that their data suggest such
screening in HIV-positive people should start as much as a decade earlier than in HIV-negative people. The Swiss HIV Cohort Study assessed the influence of aging on the epidemiology of non-AIDS diseases. This large prospective observational cohort was established in 1988 and continues to enroll new participants. Researchers calculated the incidence of clinical events from January 2008, when a new non-AIDS-related morbidity questionnaire was introduced, through December 2010. There were 994 new non-AIDS events observed during the study period, including 201 cases of bacterial pneumonia, 123 trauma-associated fractures, 115 non-AIDS defining malignancies, seventy cases of diabetes, fifty-five heart attacks, and thirty-nine strokes. Based on these findings, the investigators concluded, non-AIDS diseases, particularly diabetes mellitus, cardiovascular disease, and osteoporosis, “become more important in care of HIV-infected persons and increase with older age.” Since those studies were released, more research has concluded that the aging body with HIV does have more non-AIDS related problems. The latest and largest study, co-led by Yale, the VA Healthcare System, and the North American Cohort Collaboration built on older indices that measured biomarkers for HIV such as CD4 cell count, HIV-1 RNA levels, and patient age in order to better predict mortality as patients with HIV age. Appearing in the Journal of Acquired Immune Deficiency Syndromes (JAIDS), the study shows that there have been reductions in AIDS-related deaths in regions where ART is easily accessible, but people with HIV infection continue to experience a higher rate of mortality due not just to HIV-related factors. Specifically, the authors say that chronic HIV infection appears to make people more vulnerable to aging-related organ system injury. One study discussed at the 2013 CROI, underscored the risk of non-HIV related A&U • SEPTEMBER 2013
illustration by Timothy J. Haines
health problems for HIV-positive adults. Matthew Freiberg, MD, from the University of Pittsburgh, compared people who have sustained low viral loads to uninfected people, and found a significant increase in heart attack risk—nearly fifty percent higher—for HIV-infected people. Freiberg’s data came from 84,459 participants from the Veterans Aging Cohort Study over a median follow-up period of 5.9 years, and he used a control group “that was as similar to HIV-infected people as possible so we saw that our results were due to HIV and not something else, such as smoking,” he said. His team found that 41.7 percent of the 871 myocardial infarctions occurred in the HIV-positive group. Long-term survival, long term damage? Long-term HIV survivors are not only finding themselves at risk of more age-related diseases than the average person, but they are also the focus of research that can help both experts on HIV and aging, as well as the patients themselves. “It is clear that adults with HIV are developing some of the diseases we associate with very old people at a younger age,” says Dr. Steve Karpiak, senior director of research at AIDS Community Research Initiative of America (ACRIA). Instead of using the term “co-morbidity” for long-term, aging people with HIV, researchers are using “multi-morbidity,” which SEPTEMBER 2013 • A&U
stands for several serious health conditions that can’t be cured to a great extent, only managed. Multi-morbidity is a term historically used only by geriatricians, who often have to play medical whack-a-mole with their patients who develop one disease after another. Often, when those diseases overlap, they take an exponential toll on the body. There are several hypotheses that researchers on aging and HIV are working with now. One is that the virus causes acute inflammatory response. From the onset of acute infection HIV creates an inflammatory response and an excessive activation of the immune system, like putting the body on constant high alert. The inflammation continues, even in people with undetectable viral loads. Another hypothesis, is that AZT and early protease inhibitors were causing something called cellular senescence, or aging cells. A third hypothesis, floated by other researchers, is that those who were infected early and managed to survive with HIV before the most successful treatments were available suffered irreversible damage to their immune systems. These hypotheses are not mutually exclusive, according to Judith Campisi, a scientist with the Buck Institute for Research on Aging. “Often in biology there can be multiple causes for something, but scientists unfortunately tend to raise one hypothesis above the other. The fact is, we don’t know
exactly what’s causing the risk of age-related diseases [in HIV-positive people].” Karpiak, for his part, has been studying the effect that HIV has on telomeres, which are stretches of DNA that protect chromosomes from deteriorating rapidly. Each time a cell divides, telomeres shorten, and when they get too short, the cell becomes inactive or senescent. He believes that there is enough evidence to show that HIV causes telomeres to shorten rapidly, and that is another piece of the puzzle. All of these competing, non-exclusive hypotheses might sound familiar, just as in the early days of HIV when doctors and researchers were trying to find out how the virus actually replicates and degrades the immune system. This time, the need to find answers is less dire, since HIV has been knocked off its throne of death. “What you have to understand is, HIV goes beyond causing the immune system to collapse,” Karpiak tells A&U. “It does damage to the body even when it’s suppressed, and we’re uncovering exactly what that is and how it happens.” The impact of chronic inflammation Peter Hunt, MD, Assistant Professor of Medicine, HIV Division, San Francisco General Hospital, is working the theory of chronic inflammation, probably brought on by the effects of latent, inactive HIV that remains in the body even during antiret-
of the heart, liver, kidney, and bone. The first, and still seminal, study on inflammation caused by HIV is the 2009 SMART study, conducted by the National Institute of Allergy and Infectious Diseases (NIAID). In this study, people who stopped their HIV meds when their CD4 count rose above 350 had higher rates of AIDS-defining opportunistic infections and non-AIDS conditions, as compared with those who stayed on HIV therapy. They had higher amounts of virus in their blood, and those higher levels were associated with inflammation. The SMART trial also showed the dangers of interrupting ART. For subjects who stopped the meds and restarted them, levels of inflammation decreased but never became normal. The subjects with higher residual inflammation, had more cardiovascular events, as well as higher rates of heart, liver, and kidney disease among people with HIV at younger ages, even after controlling for differences in age and gender. But the SMART study also showed residual inflammation in the body even for those
Larry Buhl is a radio news reporter, screenwriter, and novelist living in Los Angeles. His young adult novel, The Genius of Little Things, debuted in January 2013. His comic mystery novel, We’re Here to Help, will be available later in 2013.
illustration by Timothy J. Haines
roviral treatment. He believes that chronic inflammation caused by HIV in the body, even at low levels, does cause the body to “age” more rapidly, and that aging becomes more pronounced over time. “It certainly is possible that the older HIV meds caused some of the multi-morbidities that we’re seeing today, years later, but it’s more likely that the virus itself is much worse for the body than any drug,” Hunt tells A&U. Inflammation is the body’s mechanism for fighting viruses or bacteria, and repairing injured tissues. The cells that fight the problem swell and become sore. For an acute infection, this inflammation wanes as the body heals. With HIV the immune system is constantly fighting the virus, even when HIV is being suppressed by meds. That’s a problem, because an over-stimulated immune system can become burned out or weakened. So, even though a lab result may show a high CD4 count, the amount of inflammation in the body may be causing damage on a cellular level, which can, in turn, damage tissues
who didn’t interrupt their drug regimen. And that has researchers concerned. Hunt says the link between inflammation and premature aging is strong enough that it can be assumed that, even if it isn’t the primary cause of early onset of some non-HIV diseases, that research into therapies that decrease inflammation should be a top priority. Some of that research is underway, and Hunt is working on uncovering the effectiveness of promising treatments involving statins, a class of drugs commonly used to lower cholesterol and prevent cardiovascular disease. The NIH is considering funding a long-term (seven to eight-year study) on the effectiveness of statins in reducing the inflammatory response caused by HIV. Until the results of that and other studies give a clearer picture of the link between HIV and body “aging,” Hunt has some safe, cautious recommendations for people living with the virus. “Diet and exercise will go a long way toward preventing inflammation. We know exercise decreases it, as does a diet without sugar and fat.” Whether doctors should prescribe statins to HIV-positive patients is a “gray area” until the results of studies are back. Hunt and other researchers have some treatment suggestions for doctors and health providers as well. “Because we’re seeing increased risk in osteoporosis, kidney disease, liver disease, and frailty in long-term HIV patients, doctors need to first be aware that those risks exist,” Hunt says. Proper screening for age-related diseases is warranted for HIV-positive patients, he adds. Karpiak, who was a member of a panel led by the AAHIVM and joined by ACRIA and AMG (American Geriatrics Society) which crafted guides for the management of older adults with HIV, says that multi-morbidity is becoming the norm rather than the exception for people with HIV infection. “Aging itself is a heterogeneous process. Many factors go into it. And we’re finding that HIV damage is similar.” The challenge, he adds, is getting healthcare providers to move from a silo approach to treatment, that is, treating CD4 and viral loads, to see the bigger picture managing the health of the entire person. And with the new waves of research in the link between HIV and premature aging, the picture is becoming much bigger.
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My So-Called Positive Life
long-term HIV survivors search for care, community and meaning by Larry Buhl
erry Halkitis wrote a book, The AIDS Generation, Stories of Survival and Resilience, because so little was known about this group. Halkitis, a professor of applied psychology and public health and medicine at New York University, tells A&U that the title of his book, due out in October from Oxford University Press, is about how long-term HIV survivors have made peace with the disease over the past three decades. “Most literature on aging survivors of HIV focuses on deficits, but I wanted to show resilience and document the generation that lived through this dark time and not just survived but thrived,” Halkitis explains. The book asks and tries to answer the question that people with HIV have been grappling with since around 1996: How, then, shall we live now that we’re allowed to live? To attempt to answer this Halkitis conducted ethnographic studies of fifteen HIV-positive men, mostly in their fifties, whose young lives had been derailed by the epidemic in the eighties. “That time, for them, should have been about establishing a place in the world, and by now they would be starting to think of their legacy,” Halkitis tells A&U. “But what I found was now this group is doing the business they’d put off in their twenties.” That
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business, he says, includes establishing or re-establishing careers and figuring out how to relate to other men as sexual beings and as friends. Halkitis and his colleagues interviewed subjects one-on-one in interactive, loose sessions, and followed up with focus groups. The men he interviewed bonded from the experience of sharing their stories with strangers. “They felt like there was no place for them and their peers to socialize, even in New York. Now they’re still meeting on their own for game nights and brunches after the interviews are over.” Understanding the Needs of Older Adults with HIV That sense of isolation is one of the most common complaints for older people with HIV, particularly gay men. In a hyper-youth culture, they feel uncomfortable at most bars and clubs, or they have no interest in establishments with drinking. More than anything, they are yearning for a place to meet others in a non-sexual, non-threatening environment, men of the same age who understand what it’s like living with the disease and what it was like to face an almost certain death (pre-ART). The need for connection was one of the reasons that Services and Advocacy for Gay, Lesbian, Bisexual & Transgender Elders (SAGE) was created thirty-five years
ago, according to Catherine Thurston, Senior Director for Programs. “Over the life of the AIDS crisis, our programs have shifted along with the needs of those infected, but what’s consistent is that older people with HIV felt and still feel shut out of the mainstream not just because of the virus but because of their age,” Thurston tells A&U. SAGE does not cater exclusively to people with HIV, but many of its services and programs for older LGBTs do promote a safe place where people can be LGBT and older and positive, according to Thurston. Based in New York City, SAGE has local affiliates across the U.S. and is also developing a Diverse Elders Coalition for older LGBTs of color. The need for culturally competent care becomes critical as people with HIV age. For those in their seventies, eighties, and beyond, who may need assisted living or nursing home care, finding facilities that are experienced in caring for those who have HIV-related illnesses is next to impossible. “Most nursing homes don’t know anything about HIV,” Jim Johnson, President of the National Association of HIV Over 50, notes. Johnson points out that LGBT issues become a factor in nursing homes as well. Many straight residents came of age in a time when homosexuality was considered
“One of the many misconceptions we want to reverse is that older adults don’t have sex and therefore don’t need preventative services,” Thurston adds. But they do have sex, and they do have unsafe sex. We are seeing some seroconverting in their seventies and even eighties.” It’s Never Too Late to Thrive If you were to look for a role model for aging gracefully with HIV, Christopher West-Davis, who works in research finance at a major medical center, might be a good one to follow. At sixty-two, he’s healthy, except for needing a hip replacement, a drawback of walking miles a day for years. His only HIV-related ailment is CMV retinopathy in both eyes, a common nonlife threatening illness. He needs vision enhancement software for his computer, and it’s such a non-issue that he forgot to tell me about it at first. “I really don’t think about the CMV,” he admits. In 1994, his health was deteriorating rapidly, and PCP stood a good chance of ending his life. He was one of the first people to go on protease inhibitors, and as a result was snatched back from the brink of death, he says. Unlike many HIV-positive men his age, he doesn’t feel isolated at all. “Aging and being gay can be more
Larry Buhl writes the monthly Hep Talk column for A&U.
illustration by Timothy J. Haines
a disease, and they’ve been slow or resistant to change their attitudes. Add that to the stigma and fear of HIV and you have a toxic bomb of misunderstanding that can leave an HIV-positive elderly gay man completely isolated in a typical residential facility. “Even in hospitals, the lack of information about HIV can be pretty overt,” Johnson says. “We have plenty of examples of, say, the urology department, handling specimens of HIV-positive patients with double gloves, when there is absolutely no need to do that.” SAGE is one organization that’s combating ignorance and homophobia, along with HIV-phobia for older adults. Thurston points out its robust caregiving program, including home care, supplemental support, and financial help. They’ve received a small grant—$300,000 for three years— from the Administration on Aging to train mainstream health providers in giving culturally competent services. “There are many organizations that focus on older adults but don’t know about the needs of those with HIV, or LGBT issues,” Thurston says. In addition to reaching out and educating those groups, SAGE has been assisting LGBT community centers around the country in creating safe spaces for older adults with HIV to feel welcome.
difficult than aging and having HIV,” he tells A&U. He admits that his experience may be different than many; he lives in a large, multicultural neighborhood in New York City, has lived with a younger partner for seventeen years, and his social circle primarily includes men decades his junior. “I have one friend from the eighties who’s still alive. I went to so many funerals I lost count. But recently I have met people my age who are positive and doing well physically and socially, so I’m not alone.” West-Davis’s main concern regarding HIV is not his own health or morbidity, but the fact that younger generations don’t take the disease seriously. Even though he’s doing fine, he faces an uphill battle in convincing twenty- and thirtysomethings that it’s still not a disease you would want to have if you can avoid it. “There is an almost total lack of concern that I see among the younger generation [regarding HIV]. The information is everywhere. They know how it’s spread and how to prevent it. But they don’t pay attention to it. There’s nothing I can do about that, and it pisses me off.” That generational divide in HIV attitudes is striking, according to Halkitis, fifty. People who lived through the deadliest years of the crisis in the U.S., from the early eighties to the late nineties, share an understanding, a fear, a loathing, and even a respect for the disease, that those who came of age after antiretrovirals hit the market can’t fathom. “This generation of HIV survivors suffers from a form of PTSD still,” says Halkitis, who is positive. “In a sense HIV is the 9/11 of our lives, and this is true not just for those who have HIV but for those who saw people dying around them but have remained negative.” West-Davis offered some advice for those aging with HIV. “You are defined by what you do, not by some virus. Get out. Do things. Volunteer. Spend some time with younger men and women living with HIV. And no matter what you do, enjoy it.”
A&U • SEPTEMBER 2013
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PurRe/pose Mixed-Media Artist Solis Combines Postmodern and Precolonial Influences to Imagine a Better World by Brent Calderwood
an Francisco artist Solis has been making and showing his work since 2009. Born and raised in California’s Salinas Valley (John Steinbeck, another Salinas native, described the agricultural region in several of his novels), Solis’s work reveals a heady mix of influences, embracing everything from Native American and indigenous art to Keith Haring and Japanese comics (manga). A graduate of the Art Institute of Pittsburgh’s Digital Design program, Solis employs modern silkscreen and reproduction techniques to give a mechanized, cotton-candy sheen to creations that are essentially organic, equal parts postmodern and precolonial. The cartoon-like characters who show up in his work are themselves a mix of old and new, recalling—whether in Day-Glo silkscreens on plywood or in molded resin figurines affixed to repurposed vintage radio tubes— both the minimalist geometric designs of Hopi and Pueblo kachina dolls and a War of the Worlds–like retro vision of the future. This specificity of vision is what sets Solis apart. His creations inhabit a parallel universe—literally. Not unlike that other Salinas native, Solis creates imaginary
worlds for his characters to inhabit, full of their own histories, hierarchies, customs, and moral codes. These days, the majority of Solis’s creations live on Wildewood, a planet outside of our solar system beset by a deadly virus and in the throes of its own pandemic, with friends and family struggling to find a way to save their world. Of course, this narrative doesn’t need to be memorized in order to appreciate Solis’s startling, whimsical graphics and 3-D assemblages, but knowing about it somehow injects the work with even more fun, depth, and pathos. In that spirit, Solis has illustrated and co-authored a graphic-novel series titled We Are Wildewood with his partner Chad Schimke, the first installment of which can be downloaded for free at heartofsolis.com. Solis’s most recent show, at City Art Gallery in San Francisco in June 2013, was called “Raya-Dee-O Ga-Ga,” a sly allusion to the similarly titled Queen song but also the name of a homing beacon device that helps the inhabitants of Wildewood communicate with potential allies in other universes—even, presumably, with us Earthlings. I recently spoke with Solis about his art, Wildewood, and what it all means.
Brent Calderwood: How did you come up with this imaginary world, the context for your art? Solis: The vision came to me in a dream. I saw a bear, bird, and alligator walking together, with the bear in the lead, the alligator biting his tail, and the bird riding on his back. The bear spoke—“We are Wildewood.” As soon as I woke up the next morning I started sketching. Is this a utopian world? Or are there real-world problems there? Wildewood was a utopian world until “Uno” visited and unleashed a virus, which the Alpha gems and the Warren are attempting to cure. Our real-world parallel is the attempt to enforce perfection and assimilation in order to create a perfect universe. This reflects oppressed groups, social class separation, and ethnic cleansing as well as the struggle to find a cure for devastating illnesses. As an HIV-positive person, my decision to incorporate the story arc of the devastating virus is directly connected to the HIV/AIDS crisis. You mention several names in your universe: Uno, Alpha gems, the Warren. And then there is the name you go by A&U • SEPTEMBER 2013
Top: Love Ray, 2012, assemblage, vintage photo enlarger, vintage radio tube, custom “Seren A./Warren” resin sculpture, 22 by 6 by 7 inches Left: Uno Lands, 2012, digital design, pigment print, variable size
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Top: Raya-Dee-O Ga-Ga, 2013, assemblage, modified vintage radio with custom silkscreens, 13 by 13 by 20 inches Right: The Warren-Chill Gel E, 2012, custom resin sculpture, 10 by 6 by 3 inches
professionally, Solis…. The Alpha gems take the forms of animals—a cat, a bunny, an alligator, a monkey, or an owl. They represent the forces of healing, positivity, curiosity, and wonder that are defiant in the face of the epidemic. Uno is the nemesis to the Alpha gems. He believes he is the beginning and the end, perfect and all-encompassing, able to absorb all healing forces, to replace them with sickness and cynicism. He is ultimately greedy, seeking to soak up all their good, literally like a sponge, taking their special qualities to use for his own selfish aims. The characters of the Warren are silent observers of the universe who take the form of mechanical rabbits who walk on two legs like a person. On rare occasions they step in to intervene with a distressed planet. All of the Wildewood characters are part of the same story with multiple story arcs.
I chose my moniker in honor of my Mexican-American mother, whose last name is Solis [pronounced so-LEEZ]. She is my role model, very creative and talented. I grew up watching her make doll fashions; she sold them at local marketplaces in Salinas, which inspired me to make art. Speaking of dolls, you mention kachina dolls and other traditional art forms as influences and inspirations. Can you tell me more about artists and cultures that influence your work?
The abstract style of Joan Miró was very inspirational to me when I first started to make art. The experimental use of color, shape, and form gave me a reference point for where I wanted to take my art. There is also an ethnographic feel to the art of Joan Miró, which drives much of my work today. As an adult, I look back on childhood, realizing that music was one of my best friends; it helped me through many lonely nights. The hip-hop beats and new-wave sounds I found to be almost hypnotic, taking me into a trance as I danced. I often use music as a backdrop when I’m drawing. The vibrant color palette, geometric shapes, and visual impact of the ’80s and ’90s strongly influence my work. And, of course, there’s Keith Haring. I appreciate the way he creates stories with a few strokes of the pen. I use a similar miniA&U • SEPTEMBER 2013
Left and bottom: Uno-Primero, 2011, assemblage, modified vintage toy with custom digital design, 6 by 5 by 6 inches
malist approach. He was a master of social commentary with a wide appeal. Then, I love the playfulness and boldness of manga. Out of all the contemporary art I have seen, it most influences my work. I appreciate stories such as “Sailor Moon,” which takes a tongue-in-cheek attitude in terms of design and story…and I have been a Godzilla fan all my life, which strongly guides my 3-D work. The Japanese artist Yoshimoto Nara creates art with a childlike innocence that reminds me of the scribbles of a teenage boy that would irritate a teacher. I think some collectors and critics perceive art through a narrow view. In my experience, people want art that is realistic—something they can put on their wall that they don’t have to explain to their friends. They want safe conventional images like flowers, landscapes, cityscapes, and portraits. Nara breaks all the rules. If I learned anything from him, that is to be true to myself. Selling art is my goal, but more importantly, it needs to tell a story. What are you currently working on? My art began as rough sketches and written notes. That evolved to digital design, which I developed into silkscreen templates and burned into plywood using laser-cutting tools. Over the last six months I have focused on lamps, light boxes, and assemblage pieces, which utilize all my artistic and design skills. Right now I am in the planning process SEPTEMBER 2013 • A&U
to produce a new show which features a ripple in time with a reimagined and repurposed take on everything that is functional, practical and useful. I have also recently been creating jewelry pieces— earrings, necklaces, bracelets, brooches, and tie clips created from transistors, batteries, circuits, bulbs, and knobs. These items are currently available at Carousel and Wonderland in San Francisco. With so many different ideas and projects going on, how does the Wildewood concept still apply to your work going forward? In the face of the HIV/AIDS epidemic, our freedom is diminished…by an insidious enemy that we’ve been powerless to stop. While we’re gaining ground, armed with new ways to manage, there’s still no
cure in sight. What the world needs right now is to return to magical campfire stories, two spirits, fairy tales, woodland sprites, H.G. Wells, rocket trips to the moon, and the first peoples’ myths. Wildewood is a world that I’ve created with my art…characters that defy the homogenizing effect of those who desire to strip their creativity and uniqueness. My art imagines the world of 3013, where discrimination and disease are only experienced through history books. A world where identity is universally interchangeable, so everybody imparts what they feel on the inside through freedom of expression on the outside. Brent Calderwood is Literary Editor of A&U. His Web site is www.brentcalderwood.com.
Art and Soul Hill Harper Uses Both to Address Life Challenges with Optimism & Help Bring About Positive Social Change by Dann Dulin photography by Duane Cramer
ill Harper drag races. Skydives. Golfs. Runs 5-Ks. Plays competitive Jeopardy! He even poses with an elephant— all in the name of charity. Over a decade ago, Hill appeared to be going through a bad time. He lost about thirty pounds, wasn’t eating, and didn’t socialize with anyone. No, he wasn’t sick. It was all for the art of acting. In the 2001 film The Visit, he was portraying a real-life character, Alex Waters, who died of AIDS while incarcerated. Hill was nominated for an Independent Spirit Award for Best Male Lead and won Best Actor at Method Fest for his exquisite performance. Hill fascinates by his interminable dedication. The man tosses himself full-throttle into his passions and his accomplishments prove it. He graduated magna cum laude from Brown University, earned a JD, cum laude, from Harvard Law School, holds a Master’s in public administration from Harvard’s John F. Kennedy School of Government, has received seven NAACP Image Awards, is the winner of a Best Books for Young Adults award from the American Library Association, and he’s a New York Times best-selling author as well. A few years ago, Hill was named a “Hero” at the annual Heroes in the Struggle by the Black AIDS Institute, where he also shot a PSA for them. The man was even bestowed the title as one of the “Sexiest Men Alive” in People magazine! “I could never live my life without serving others,” states Hill matter-of factly, from his dressing room at CBS Studio Center in Los Angeles, where he is wrapping up another episode of CSI: NY. (He recently left the hit series after nine seasons to join the cast of USA Network’s Covert Affairs as CIA station chief Calder Michaels.) He’s involved with many organizations including the Alzheimer’s Association, Barbara Davis Center for Childhood
Diabetes, Big Brothers Big Sisters, Eracism Foundation, Leeza’s Place, Magic Johnson Foundation, Make A Film Foundation, United Negro College Fund, Somaly Mam Foundation (to prohibit sex slavery), and The Carousel of Hope. A few years ago, Hill founded Manifest Your Destiny (mydf.org), which empowers underserved youth through education, mentorship, and scholarships. Some activities they provide are a community-service day where kids work at a mission and a Saturday conference workshop about college preparation and career exploration. This summer they sponsored their fifth year of a weeklong Empowerment Academy, exposing participants to new ways of thinking and living. In Hill’s fourth book, The Wealth Cure, he writes, “Volunteering really is an investment in yourself. It lifts you up in so many ways.” (Hill’s new tome, Letters to an Incarcerated Brother, will be out soon.) His altruistic nature stems from his family. (Hill’s birth name is Francis Hill and to honor his family he wanted to unite both last names so he also took Harper, his mother’s maiden name to complete his new identity.) “It’s just so organic to me. It’s not something that I think about,” says Hill. Dressed in a maroon T-shirt, a light olive slightly furry winter jacket, black jeans, and ebony Kenneth Cole boots, he’s camera-ready to shoot a final scene as Dr. Sheldon Hawkes. “I remember one day coming down for breakfast at my grandparents’ house, a farm in Iowa, and there at the table was my grandmother and this guy I didn’t know.” He breaks and leans faintly forward in the standard 4-wheel rolling office chair to add an aside, “This story will blow you away.” He then eases back into the chair and continues. “I turned to my gramma and said, ‘Who’s this guy?’ She replied, ‘He’s going to be staying for a while. He just got out of prison and he had nowhere A&U • SEPTEMBER 2013
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to go. He doesn’t have a job and he’s going to be doing some work around here. He’s going to stay here until he gets back on his feet.’ And this [act of kindness] happened a lot…a lot. “But, listen to this. In 2007 during the Iowa caucus and leading up to it, the Obama campaign [Hill and Barack met on the basketball court while students at Harvard] asked me to go back to my home state. I spoke all over the state. I was a surrogate for the Obama campaign everywhere but at this particular time, early on, they wanted to focus on Iowa. At one point this old man, easily in his eighties or nineties, with the most grizzled hands, came up to me and said, ‘I just wanted to shake your hand and say hello.’ I said, ‘Hi. How are you, sir? It’s such a pleasure to meet you.’ And he said, ‘Do you remember me?’ And I said, ‘No.’ He said, ‘My name is Henry. Your grandfather gave me a job when I got out of prison…and I just wanted to say hello.’” Hill pauses for a moment, then confirms, “And that was the guy! That just shows you that you never know where people are going to end up, you don’t know who or how…if you just help people…,” he halts for a moment then punctuates the next few words murmuring with beseeching fervor, “just… help…’em. My grandparents are long gone, but they helped this guy, who’s gone on to live a long life.” He had a chance to help reignite this spirit of opportunity and courage when, last month, he emceed the fiftieth anniversary of the March on Washington with Soledad O’Brien. Just then, as if on cue, there’s a rap on the door. It’s the A.D. (assistant director) who has a technical question for Hill. He says he’ll take care of it once he’s finished here. She replies, “Fine. We should be ready for you very soon,” and exits. Hill’s dressing room looks very much like a dorm room, though somewhat larger. There’s a leather couch, a window with wood panels that’s drawn, a framed poster of CSI: NY, an original contemporary painting about ten-by-five feet that’s propped against the alabaster wall, an Inversion Therapy table (supposedly reverses negative effects of gravity), and a few light weights scattered on the floor along with his running shoes that appear freshly used. CNN is muted on the flatscreen TV that’s perched upon a black compact refrigerator. Hill has great respect for his family, more precisely, both his grandfathers, Harold Hill and Harry Harper. “They are people who represented the best of their community, represented the best of what family is, and what hard work represents. Those two men, I think, really raised a very SEPTEMBER 2013 • A&U
high bar for which to aspire, for me, and everybody in my family. I really appreciate them and their influence on me.” One of the times Hill applied his grandparents’ exemplum was when he volunteered for Harvard’s Legal Aid Project, which was his first encounter with the HIV/AIDS epidemic. “I became aware of how, for so many people, it destroyed their lives. This is the late eighties, early nineties, so it was a different time and [there was] a different relationship to AIDS,” he clarifies. “I was working with individuals who were being put out of their homes because of discrimination. We were working with tenant’s rights issues around people who had AIDS. It blew me away,” remarks Hill, gingerly swiveling back and forth in the chair. “You’re talking about indigent individuals who couldn’t afford lawyers and so they had these Harvard law students attempting to help them.” Not long after graduating from Harvard, he and his cousin made a short film called One Red Rose, about an HIV-positive black woman who thought no one would love her. “And this was before there was any talk about women and AIDS,” Hill points out. Five years later came The Visit, which was extremely challenging for Hill. It was a five-week shoot and the director shot the entire film in sequence, which is very uncommon. To prep, Hill did a great deal of research with many incarcerated individuals who were either HIV-positive or who had AIDS. He’d find them through organizations he contacted and would meet the prisoners during their visitation hours. “I would just ask them questions like, ‘The combination of the prison of the disease itself combined with the prison of actually being behind bars, what does that mean?’” He explains. “When something is taking over your body that you didn’t choose for it to be there and then also you don’t have much choice of where your body moves, with those two things, what’s going on? How can you stay healthy? How do you stay mentally healthy?” He pauses, “I learned so much.” “One guy I interviewed kept talking about how his feet felt like they were…,” he hesitates then whispers these two words in a disturbed tone, “‘…on fire.’” “The way he described it to me it helped me so much to form the character I played. I actually put his obituary above the door of my trailer and I really felt that he was there with me when I was shooting. I would always see his picture as I walked out to the set.” He clasps his hands together and lays them in his lap with his legs crossed. “The director and
I made a decision that during the film I wouldn’t speak to anyone—neither crewmembers nor other cast members—just to simulate isolation.” Hill ate only lettuce and drank water so as to create the illusion of wasting. “In a very short period of time, at the start of the movie I weighed 160–165 and by the time the movie ended I was around 130–135. My body sort of was eating itself. It was definitely physically grueling, and emotionally grueling not talking to anybody.” He briefly ponders the memory. “I wasn’t talking…and I wasn’t eating….” He rips off some hardy chuckles, shaking his head. “As an actor it was a wonderful experience because it’s so rare that you get the opportunity to sink your whole self into a role.” He interlaces his fingers, inverting them, and presses them against his chest. “That’s probably the role I’ve played in my entire career that I’m most proud of.” Not long after The Visit, Phill Wilson, executive director of the Black AIDS Institute, who happened to be an occasional consultant on Showtime’s series Soul Food, approached Hill. He wanted Hill to play a character with AIDS who returns home to tell his family. It would be a two-episode arc helping combat homophobia and ignorance surrounding HIV/AIDS. Hill fervently agreed. “It was well-written,” he notes, looking back, “and it was made to decrease stigma in the black community by using Soul Food as the entertainment platform.”
Hill uses his art as a springboard toward educating others about causes he’s close to. “I do believe that there’s power in our medium, there’s power in this business. There’s so many people that argue the opposite.” He dons a deep mogul voice, talking out of the side of his mouth rattling off, “I can say whatever I want. I know it’s negative, but it’s just entertainment, there’s nothing behind it, so I can use the ‘n’ word, I can shoot people, I can have violence toward women, and it doesn’t have any effect on the people watching it.” He wipes off some perspiration near his eye with his jacket sleeve. “Clearly you know I believe the opposite.” He smiles and counters, “I do believe that when you put the positive on something, when you shine a light on something, it has an effect. Therefore the negative has an effect as well.” His optimism was strongly challenged in July 2010. While writing Wealth Cure, Hill felt something strange going on with his throat. After undergoing tests, Hill received the dreaded news that he had thyroid cancer. The word “cancer” was not unfamiliar to him, as several relatives of his had died of the disease, including his father in 2000. When he thought of this and his diagnosis he felt alone and fearful. He then recalled one of his favorite sayings, the acronym for FEAR: False Evidence Appearing Real. To stay positive about the situation, he writes in his book, “I don’t believe we are destined to follow in the footsteps of our parents or our forebears. We have the will and the power to create our own destiny.” That he did. His thyroid was removed, and though he couldn’t speak for nearly two weeks, it was an early detection and there was no damage to his vocal faculties. It was a one hundred percent cure! “My experience really made me focus on what my wealth factors are. In other words, what makes up true wealth. I realized that health is the most important factor—for me, and maybe it’s not true for anybody else, I can’t speak—but that made me realize that health is my number-one wealth factor by far. It doesn’t matter how much money you have, it doesn’t matter how successful your TV show is, it doesn’t matter who you know, who they are, what they’re doing,” he cuts off and lowers his otherwise youthful expressive voice, “if you don’t have your health, it doesn’t matter.” “Having cancer really made me rethink a lot of things. Oftentimes when you are feeling good you can treat your body very cavalierly. The assumption is, ‘Well, I feel good all the time’ and when that gets challenged, you tighten up and, ‘Well, I’m sick SEPTEMBER 2013 • A&U
now, so I’m going to drink a lot of fluids.’ You should be doing this anyway [when you’re healthy].” An important part of Hill’s health regimen is playing safe and getting tested for HIV. He’s a huge advocate for condoms and includes the subject in his 2006 book Letters to a Young Brother and in the 2006 anthology book Not in My Family: AIDS in the African American Community. Hill writes in his chapter, entitled, “AIDS: Who Will Step Up?”: “Condoms aren’t free, so it takes a commitment to use them. If people go around and say that condoms take the fun
and spontaneity out of it, they are attaching a false and negative message. I remember when it wasn’t cool to wear seatbelts. Now, it’s not even a thought. People get in the car and buckle up. It not only has to do with laws, but also retraining people’s minds. The same thing has to happen with using condoms. It has to become a necessary part of the whole sexual experience.” Hill admits that over the years he’s consistently practiced protected sex. “I used a condom always in relationships up until a point where we both have been tested and we both decide that we are exclusive. And at that point, you know…no.” When asked, Hill answers that he’s had a girlfriend for over a year. “Getting tested is the key. There is no stigma to that, especially for young people….” Footsteps approach outside. There’s a double knock. The A.D. says, without
opening the door, “ Hill, we’re five minutes away.” He acknowledges and we pick up where we left off. Hill is a motivational speaker, addressing youth across the country, as well as couples and business leaders. In addition, his organization, Manifest Your Destiny, targets young folks as well. I ask him what his thoughts are about how to enforce safe sex practices on the younger generation. “I think what we don’t do well enough as adults is that we don’t compete for their attention. They have all these things they get bombarded with. It’s up to us to make those things more interesting and have good messaging. If we have something great to say it’s our job to figure out how to package it. It’s not their fault for not listening; it’s our fault for not making it cool.” When Hill speaks to kids about a particular topic he approaches them on their level. For example, with credit card debt and credit ratings he uses Bow-Wow’s song, “Under 21 with a Black Card.” “This is a boring subject to these kids. What kid wants to know about this?!” grimaces Hill, as his body trembles. “But if I use the lyric and package it in the right way, it can be the coolest…subject…matter…ever!” The energy swiftly shifts. Hill leans forward, rests his elbows on his knees, while his hand grasps the top of his other hand’s wrist. He looks down, but a tad outward. As if giving a eulogy, he asserts, “Look, awareness is very important in this epidemic. We need to talk about it….” His soft brown eyes stare directly into mine and he appends, “Because it saves lives.” Caring is just a part of Hill Harper’s nature. When he commits to something, he’s devoted—heart and soul. But how does he know what to concentrate on? “I think causes find you,” he utters with utmost sincerity. “That’s in part why I think we all should be activists in our own way. As I get introduced to something, I decide to just figure out, ‘Well, how can I be of service?’ That’s what I do all the time. I want to offer myself in whatever way I can. When there’s a problem, I say, ‘How can I help?’” As he stands, readying to dash off to the set, Hill cracks a warm smile and concludes, “That’s what all of us should be asking.” Read the full interview on-line at www.aumag.org. For more about the work of Duane Cramer, log on to: www.duanecramer.com. Follow Duane on Facebook: Duane Cramer; Twitter @DuaneCramer, on Instagram: EyeSeeIt. Dann Dulin interviewed Scott Bakula for the June cover story.
Good to be bad Long-Time Activist Michael Kearns Endures and Thankfully Won’t Give Up by Dann Dulin
ichael Kearns is always ready for his closeup. “If you say you’re going to take my picture, I’ll be there!” he quips. “Just give me twenty-five minutes to phoof my hair.” A fierce famemonger, in the same spirit as Oscar Wilde, he echoes the literary icon’s phrase, “There is only one thing in the world worse than being talked about and that is not being talked about.” This multi-career man (actor, director, playwright, writer, producer, teacher) has never had that problem. Michael came to prominence in the mid-seventies when he posed as memoirist Grant Tracy Saxon for the book The Happy Hustler, which included a completely nude centerfold. During this reporter’s college days, it was the talk of the campus; however, he was neither the writer nor the hustler. (Though later, Michael did mirror the book and became a working hustler and porn star, indulging in drinks and drugs which led him down a dark, narrow alley). This was decades before Oprah exposed James Frey and his faux book, A Million Little Pieces. But being ahead of his time is nothing new. Michael’s checkered CV also contains other “firsts:” first actor to come out, and the first actor to go public with being HIV-positive, which he announced in 1991 on TV’s Entertainment Tonight. In 1995, this single HIV-positive man adopted an African-American child, Katharine. That may also be a first. As an actor he’s appeared on such hit shows as Cheers, Murder She Wrote, General Hospital, Knot’s Landing, Beverly Hills 90210, and The Waltons (YouTube it as there’s a touching scene between Michael and Richard Thomas). In films, to name a few, he appeared in Brian DePalma’s Body Double, Kentucky Fried Movie, River Made to Drown In, and HBO’s And the Band Played On (playing Cleve Jones). He also performed on Broadway in Tubstrip. As a writer he’s published six books; his latest title is The Truth is Bad Enough: What Became of The Happy Hustler?—a juicy full-on no-holds-barred tell-all. Though he calls himself notorious, what you may not know about Michael Kearns is that he’s been in the trenches of the AIDS war from the beginning of the onslaught. In the mid-eighties he formed Artists Confronting AIDS, a group that produced AIDS-themed plays and he co-founded S.T.A.G.E. (Southland Theatre Artists Goodwill Event), an annual Los Angeles fundrais-
er that is the longest running AIDS benefit in the country. His advocacy is intensely integrated into his projects, having performed solo theater pieces such as Intimacies and the follow-up, More Intimacies, portraying many ethnic characters with HIV/ AIDS. Michael’s groundbreaking impact on the arts garnered him numerous awards over the years, as well as grants, for his performances and humanitarian accomplishments. Today, though he’s older, he’s hardly mellowed. There’s still a glint of the bad boy and that mischievous, incorrigible force of courage and strength. Clad in baggy jeans, an open striped grey and white dress shirt that renders a loose-fitting red T-shirt, the tall lad has a serious thick head of stunning hair, now streaked grey, and his looks are still alluring, though somewhat weathered and a speck scruffy. Throughout our afternoon together he’s playful, direct, animated, enthusiastic, effusive, entertaining, engaging…and definitively endearing. Yes, the man has more energy than Richard Simmons. In his new tome, The Truth is Bad Enough, he writes an excruciating passage about losing his partner, Eric, in 1997, who is dying from AIDS. “…I kissed his forehead and then his eyes, gently and softly. Without realizing what was happening, I felt my tongue inside his mouth and his tongue was inside mine and we were kissing, as the saying goes, like there was no tomorrow. It was one of the most erotically charged kisses I’d ever experienced—driven and hot, all at once calming and utterly unsettling. He could barely breathe or speak or move his head, but jeez, could he kiss. On his deathbed. Our last kiss.” Eric is but one of countless deaths that Michael has endured through the years. The losses still haunt him. “I think it increases with time. I miss the people more this year than I did last year!,” he laments with an upbeat quality from his apartment in the Silver Lake district of Los Angeles, overlooking the Hollywood Hills. His cheerfully colorful, modest pad is a mix-mash orgy of tchotchkes and antiques. “The longer I’m around the more I look at those lives that were truncated. I’m sixty-three and so many of my friends didn’t live to be forty! When I was forty-three that didn’t seem sooo horrible and I thought I would be dead about this age or so.” His deadpan tone is offset by an articulate charisma. “Now that I’m older and have done so many things that my friends never experienced, like A&U • SEPTEMBER 2013
Photographed Exclusively for A&U by Annie Tritt SEPTEMBER 2013 â€˘ A&U
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tattoo photo courtesy Michael Kearns
having a child, taking trips abroad, achieving dreams….” He shakes his head. “To be taken away so early without any warning. My depression is partly due to survivor’s guilt.” Having been HIV-positive for over twenty years, Michael feels fortunate in comparison to others, since he’s only suffered with depression and severe peripheral neuropathy in his feet. He ascribes these conditions somewhat to the meds. “I just can’t believe that these so-called ‘miracle’ medications don’t eventually have some kind of long-term effects,” he contends. “There must be things we don’t know yet, as there were things we didn’t know about protease inhibitors either. My neuropathy could take another eight or ten years to progress to a point where I need a cane, but that might never happen. If it does, it’s a Big Deal because that requires pain medication and that results in other side effects.” He rationalizes that his depression could be, in part, genetic, as both his parents suffered from the condition. “Those are my two things,” he remarks with a flippant wave of a hand, “and, at times, can be pretty tough to fight.” Through all his combat though, he’s survived with energy and feistiness intact.
His longevity, he says, is due ing anything back.” to helping others, being vocal “But I’ll tell you, helping other people, about HIV, and having adopted for me, has been the most valuable,” he Katharine. She has brought expresses with compassionate sincerity. joy to the proud father and “I’ll give an example. The other day I took she’s unquestionably played an a friend to County [Hospital] because he important role in his health. doesn’t have any money at the moment. Now eighteen and attending He’s got some skin issues going on, which Idyllwild Arts Academy, she’s a may or may not be HIV-related. But going filmmaker whose documentary to County is a six-hour—at least—process,” about gay parents adopting he moans, hunching down, leaning into children recently aired on PBS. the top of the L-shaped sofa propped up It bothers Michael, though, to by his elbow. “Some people need others to count her as one of the reasons handle things like this, because it’s not fun for his prolonged existence. and one can easily start awful-izing and “Now…I don’t want to put that catastroph-izing.” His remark hangs in the on her. It’s not her responsibilair. He looks at me with friendly intensity, ity to keep me alive. So I try to “Helping others has saved my life as much avoid that reason.” He quickly as the medication.” scans his living room, focusing Michael’s altruistic nature was rocked in on his snowy white cat, Sir when he first heard about the epidemic Ian (named after his friend at Conrad’s Coffee shop in Glendale, CalIan McKellen), who nestles ifornia, in 1982. A friend from Michael’s next to him. “Maybe I’m still hometown of Chicago was visiting and around because of my cat, or they were having lunch. His friend said, the neighborhood I live in, or “You know, I’ve heard of a bunch of guys the paintings I’ve collected.” He getting sick and it seems like it’s a serious points to the original portrait kind of a cancer. A lot of them are into paintings hanging on the wall hardcore sex.” He takes a gulp of Diet just above me. “I think all those Coke. “We started almost immediately septhings are a part of the reason arating ourselves: ‘Well, it’s the guys who I’m still here.” do poppers, it’s the guys into S&M, it’s the Another element of his bottoms.’ We tried to believe, ‘It’s-not-gosurvival is his eternal outspoken- ing-to-be-me.’” ness about HIV. He heard years One of his first, of many, encounters ago that if you were out about your status with AIDS came when he called upon a sick you would live longer. Even mental health friend who lived not far from where Michael professionals resides now. “He agree that secrets lived on Hyperion, destroy one’s life. I remember, and he “Well, there’s was walking around probably some his bed—I believe truth to that,” he he was in the Gay confirms, sliding Men’s Chorus—and one leg under he was…sweating his thigh which profusely. I never gives him a lift saw anything like and straightens it in my life! I don’t his spine. “Get think he was forty involved, be of years-old,” groans service to others, Michael, clenching and don’t hide.” his fists. “And he I mention Larry was repeating over Kramer as a and over, ‘What am role model and I going to do? What Michael instantam I going to do?’ Written on the body: Michael shows off one of He knew what was ly shouts out his tattoos. with enormous going on.” Snapping his passion, “Larry fingers, Michael broods, Kramer! God love him! He’d be the prime “That was one of the first memories I have of example of somebody in terms of longevity feeling like, ‘What am I going to do?’ based on anger.” Michael laughs, nods, Despite his fears, Michael took action, and adds, “Righteous anger and not holdlike James Bond setting out on a new mis-
sion gunning his Aston Martin. He established organizations, looked after others, and jolted the arts world with prolific HIV/ AIDS-related material. “I feel like I went to college studying how to care for people and learning how to deal with these issues of illness and death,” declares the former Goodman School of Drama graduate. “I feel that it’s some kind of blessing that came with all the horrible, horrible, horrible, horrible, horrible years of panic, of fear, of sadness, and of grief…” His voice wobbles and he stops momentarily. Michael continues, “It was just sheer horror.” He repositions himself. “Look, you have two choices [when you are diagnosed]. You either allow it to paralyze you or you do something, and I’ve always been sort of an action-kind-of-guy. Sometimes not for all the right reasons….” He lets out a flutter of cackles sounding like the flamboyant comic Rip Taylor then counters, “But I’ve always taken action!” Michael is a proactive parent as well. When Katharine was twelve, he expanded her awareness by taking her to Johannesburg, South Africa, to volunteer for a month at Cotlands, an orphanage where most of the kids are either HIV-positive or have lost their parents to AIDS. He writes about their experiences in The Truth is Bad Enough, “One little girl was attached to an oxygen machine; another wore a hearing aid; yet another had virtually no control of her legs and could not walk….The object of my affection was Karabo. Karabo was less than two feet in length and had virtually no muscle tissue. Holding her in my arms was like holding a puppet made of wooden sticks; her flimsy arms and legs hung limp. Although she had a ravenous appetite, she weighed no more than my shoe. Karabo was about to turn three years-old.” Beside all the hardcore in-your-face devastation, what captivated him the most about the trip was Katharine’s relationship with the kids. “It preceded anything I could have expected,” he shares, his steel grey-blue eyes moisten. “She’s broken all stereotypes. This is a child whose mother left her at the hospital, was born addicted to crack cocaine, and weighed less than two pounds so she was put in an incubator. Then they put her into foster care and at five months I got her.” Naturally, Michael has well-docuSEPTEMBER 2013 • A&U
mented Katharine’s adoption in his new memoir. Is there anything presently on the wordsmith’s worktable dealing with the epidemic? He answers at once, “Of course!” He thinks, briefly glancing away. “It’s so painful…I guess I haven’t worked it out yet. That’s the truth. HIV is always going to be part of the story.” His new project is centered on guns. The story is about a white male character with HIV who lost his lover to suicide just before the cocktails arrived. He then adopts a black kid, not knowing fully about his South Central Los Angeles roots. Father and son have a close relationship though the kid has bouts of eruptive anger. One day the kid goes into…well, never mind. I’ll stop here and not reveal the spellbinding plot so as to not invite piracy.” As with the character’s adoption, Michael notes he likes weaving a bit of himself into each story. For World AIDS Day this year, he’ll be performing his nightclub act, titled Look Who’s Here, accompanied by maestro Wayne Moore. It will be produced, in part, by Broadway Cares. “Certainly AIDS matured me if anything did. It gave me a sense of purpose,” he offers. “I think the sad thing is that we do think it’s over and no longer sexy and a lot of people don’t want to deal with it. I think there’s a lot more risk taking now,
too. And these young kids who think, ‘Well, I’ll just take medication and everything will be dandy. Weeeellll…they don’t know what that medication is ultimately gonna do when they become forty or fifty.” He pauses. “If I tried to put myself into the shoes of one of those kids, I know that I wouldn’t necessarily be listening either. You know, it’s the recklessness of youth. But I don’t want them to have to go through what we’ve gone through to learn the lesson and then have another whole wave of people suffering.” This man bears no regrets for his spicy past because his life journey has brought a depth of clarity to his rebel spirit. Michael takes a deep breath and concludes, “I think HIV/AIDS is the most important thing that happened to me and it certainly formed me—and I don’t just mean my diagnosis. I mean, in many ways, the whole AIDS epidemic is who I am.” Read the full interview at www.aumag.org. Even more of Michael is exposed in an episode of In Bed with Dann & Kelly at www.DANNandKELLY.com. For more about the photography of Annie Tritt, log on to: www.annietritt.com. Dann Dulin is Senior Editor of A&U.
Oh, the Places We’ll Go! Traveling Abroad with HIV/AIDS May Be Challenging, But the First Step Is Knowing the Facts
) ! t o N r O (
by Chuck Willman
here is nothing quite like seeing this great big wonderful world! Being able to visit other countries and enjoy the culture, history, people, food, and meeting and making new friends is a dream for those of us who do not travel outside our borders for business. A lot of us have “bucket lists” of places we’d love to visit, or may even be in the process of making plans in the near future to take that trip of a lifetime we’ve always dreamed of! But when you’re living with HIV/AIDS, traveling outside of the United States can often present some challenges that you may never have imagined. (Until the travel ban was lifted here in the U.S., it was even challenging to travel to our country.) In fact, in some cases, these challenges may actually prevent you from going to certain parts of the world altogether. I’ve been very lucky to have traveled a great deal. I was a flight attendant for several years and have had the opportunity—through work—to spend time throughout Europe, parts of the Middle East, even a phenomenal layover in Kathmandu, Nepal, once! I have to admit that these travels took place several years ago (I retired my wings in 1997, while I was still in pretty good health). But I have also enjoyed a few fantastic trips abroad with my partner over the years, one of the most memorable being a three-week trip through Scandinavia. However, the world has changed, and some (actually quite a few) countries are no longer welcoming to those of us living with HIV/AIDS. In fact, there are countries we aren’t even allowed to enter! The list continues to grow as the HIV epidemic spreads and countries grapple with ways to prevent further infections. Below are some resources for you to—I hope—help you make your travel plans. This is not a complete guide though. Please don’t be overwhelmed with the information. But I wanted to provide you with some very important resources that really are crucial before making plans to leave the United States. I can’t stress that enough: If you are unprepared, you could face very unpleasant consequences. In no way am I trying to scare you off from traveling! But it is extremely important to be informed and prepared. Preparing for your trip There are some wonderful Web sites you really must visit and you should start by reading all the information listed on them. These sites provide very detailed guidelines that must be followed. There really is no room for error here. First of all, you should visit the Travel.state.gov site, which actually features a link for specific information for LGBT travelers. There is a wealth of information on everything from crime (with the global economy problems, crime—sometimes violent crime, including kidnapping—around the world is on the rise and something to keep in mind), water/food supply safety, travel warnings, health warnings, health requirements, etc. On this specific site you’ll find a “Country Specific Information” link where you simply click on a letter of the alphabet to find out about a specific country.
Then click on the “Entry/Exit Information for U.S. Citizens” which leads you to a great deal of important information, including some guidelines (if available) for HIV/AIDS. (Some countries will have this information on another site I’ll point out shortly.) Next, visit CDC.gov. This site will provide you with health information like where malaria is a big problem, or where STDs/STIs are prevalent, and much, much more. AIDS.gov is another important site to visit, as well as the WHO (World Health Organization) site, WHO.org, which also lists country-specific health information and warnings alphabetically by country via downloadable PDF brochures/files for each country. The WHO.org site is very important to visit as it contains recent information from the international medical establishment. (But so does Travel.state.gov.) I would recommend taking the time to visit both and reading all information. Entry denied? There are, unfortunately, some countries where those of us with HIV/AIDS will either not be permitted to enter, or are subject to required HIV-testing, or may be “detained” if you even appear ill or “infected with any ‘communicable’ disease.” Most of these countries are developing countries, but even countries in Asia, Africa, and others have very strict guidelines, especially for carrying HIV/ AIDS medications. Some of you may remember a gay cruise being turned away from Istanbul, Turkey, a year or so ago. In fact, I was stunned to find out that recently Sweden (a country I visited and loved in 2003 with my partner) now has new classifications for narcotics/pain medications: you are only allowed to bring a certain amount of these medications, and they can be confiscated. Due to the prevalence of drug trafficking, particularly of prescribed opiates and other “controlled substances,” countries are really cracking down on what enters their borders. It’s also extremely important to always remember that you are obligated to comply with all laws of the country you are visiting. For example, my partner and I were in Greece last summer. We had a wonderful trip, cruising on a luxury yacht (a 2-for-1 deal we found!) and spending time in Athens. But we were warned—which surprised us as you think of Greece as one of the most “homoerotic” countries on the planet!—that public affection between men (especially tourists) could result in being arrested for violating “morals laws,” and we’d have to pay a fine. (Those kinds of “laws” are becoming real scams in a number of countries. They’re looking for ways to make money.) In Egypt, “consensual same-sex relations are illegal…penalties include fines and/or imprisonment.” In some other countries, persons convicted of violating “morals laws” face prison, fines, deportation, flogging!, or even death sentences! (You can find these laws outlined on the Travel.State.Gov/LGBT Web site under the “Country Specific Info.” links. The Web site also lists general travel warnings, as political and other issues are constantly changing.) Take them seriously. You may want to leave your “I’m A&U • SEPTEMBER 2013
illustration by Timothy J. Haines
with Him/Her,” AIDS Walk, or Gay Pride T-shirts at home! In some places, this is not restricted to LGBT public displays of affection—straight people have found themselves in trouble, too. Get yourself a really good travel book, first. Then visit all of the sites I’ve mentioned above. (And you may find even more valuable information mentioned in some recent travel guides.) Study! Make sure you have a valid U.S. passport, any visas required, and that the documents are in good condition (you can be denied entry into some countries just because they don’t like how your passport looks; if the passport is worn, or has torn pages, that could be a problem, and you may need a new one). Your passport should also be valid for at least three to six months after you plan to leave the country you want to visit. So if you’re cutting it close, renew your Passport as soon as possible. And please remember: Your U.S. passport does not guarantee entry into another country. It only guarantees that you can re-enter the United States. Also, make sure you keep your passport with you at all times. There have been times I’ve even been asked “for my papers” by a merchant, or in a museum. As long as you have your valid passport with you, you’re fine. Medications (this is really important!) Another Website to visit is TSA.gov. There you will find information about exiting and re-entering the United States. It has been my own experience that re-entering the U.S. has been more problematic than leaving it! Go figure? All medications must be in their SEPTEMBER 2013 • A&U
original containers with the Rx #, doctor’s name, your name, and what the medication is clearly labeled on the container. This is a must for traveling abroad. You may get away with packing a week’s supply in a baggy or pill container if you’re traveling within the U.S., but NOT outside of the U.S. What really sucks is if you receive three-month supplies of your meds in those large “milk bottle-sized” containers. You will have to take the container. But here’s the weird part: in many cases you must count out only the amount of medication required for the trip, with a two to three-day extra supply in case of an emergency. (That information is outlined at TSA.gov, Travel.state.gov, or WHO.org sites.) I have always traveled with my bottles (all eleven of them!) plus a typed list of each medication, my doctor’s information, my home address/phone, my insurance information, and emergency contact information, and a physician’s name I found listed in a hospital where I’m going. (This can simply be done via a Google search. You don’t have to have a doctor lined-up, but listing at least a hospital’s address and phone number may help should something happen. This has come in handy on more than one occasion!) Yes, it is extra work, but it makes you look organized if/when asked, and you’re not hiding anything. (That’s important!) Oddly, I’ve gone through customs in other countries without them even opening my carry-on bag and checking after doing all of this work! (All medications must be in your carry-on, by the way!) However, I have had the bag opened and “investigated” before
coming back into the U.S.—pills counted!—on a few occasions! I’ve even had it done more than once while re-entering the U.S. Go figure! Your final checklist It’s important to have the U.S. Embassy’s address and phone number for the country you are visiting on you (I stick a typed little card in my passport). Your insurance should be valid where you are traveling. For instance, in Ireland, you would be required to pay in cash, up front for almost all services, even with insurance. Other countries operate the same way. Check with Medicare, Medicaid, or your private insurance and ask if you are covered and for what services in the specific country or countries you plan to visit. When you visit the sites I’ve mentioned, really read them and understand the laws, customs, etc., where you’re going. There may even be restrictions on places where you can take photographs. (That’s outlined on the Travel.state.gov site, too!) I hope I have not scared you from taking a trip. That is/was not my intent. But the world is changing, and, unfortunately, it’s our responsibility to know what we have to do. That’s the reality. But there really is something amazing and incredible touching down in another country and having a fantastic time! And you can and will, as long as you’re prepared and knowledgeable. Happy travels! Chuck Willman writes the First Generation column for A&U.
iiV Healthcare is exclusively devoted to the treatment of HIV disease, and the singular focus is arguably paying off. Tivicay (dolutegravir) is the first drug out of the ViiV Healthcare pipeline to be FDA-approved. The integrase strand transfer inhibitor is indicated for use in combination with other antiretrovirals in the treatment of HIV-1 in adults and children ages twelve years and older weighing at least 40 kg (approx. 88 lbs), and it boasts a checklist of positive attributes. Adherence-friendly once-daily dosing (50 mg) with a single tablet, check. Can be taken with or without food, any time of the day, check. No boosting required, check. Favorable side effect and drug interaction profile, check. High barrier to drug resistance, check. In addition, Tivicay has been shown to be effective for those with resistance to two or more classes of antiretrovirals, as well as those who have developed resistance to raltegravir and elvitegravir. It has been shown to be superior to raltegravir in integrase-naive, treatment-experienced patients; it’s been shown to be non-inferior to raltegravir in treatment-naive patients, as well. It also compares favorably with efavirenz when used in a first-line therapy. Studies have also shown dolutegravir, in combination with abacavir/lamivudine, to be superior to tenofovir/emtricitabine/ efavirenz (Atripla). A study comparing dolutegravir with darunavir is in the works. If it sounds like ViiV Healthcare has done its homework before bringing the agent to pharmacy shelves, it has. In its submission to the FDA, ViiV presented data from four pivotal Phase III clinical trials, cumulatively treating 2,557 adults (who received at least one dose of study medication). And that broad-based approach to patient needs is not a fluke, but part of the DNA of the ViiV pipeline. Or, as John Pottage, MD, Chief Scientific and Medical Officer, ViiV Healthcare, puts it, ViiV’s “secret sauce”—namely, a “focus on and commitment to all HIV patients. We’re focused on everybody.” And everything HIV.
Needle ViiV healthcare introduces its first fda-approved agent
It’s not concerned with a niche, in other words, but the whole of the HIV landscape. ViiV knows that the bar is set high, but, not content to rest on the past successes of its heritage pipelines, it dismisses the idea that ‘HIV therapy is good enough. We don’t need anything more.’ Dr. Pottage has heard this espoused in some corners of the HIV research community. “We don’t agree with that,” he says.
As a company formed out of a partnership between GlaxoSmithKline and Pfizer nearly four years ago, with Shionogi as a recent addition, ViiV has proceeded from the start to develop a pipeline that ongoingly takes into account the current standards of care and their benefits and limitations. For example, when ViiV developed Tivicay, explains Dr. Pottage, “we wanted to look at the barrier to resistance, safety, potency, drug interactions, which is a problem with some medicines, and also fixed-dose combinations/single-tablet regimens, which we are [intensely] committed to. So we put all of those things into the mix.” “As dolutegravir was being developed we had initial findings that looked pretty good,” says Dr. Pottage. But ViiV didn’t settle for a limited label based on “pretty good” initial findings, a label which most likely could have been obtained. It pursued not only a wide range of patients—particularly treatment-naive patients, integrase-naive patients, patients with integrase resistance, among others—but also an early pediatric program. “We also did more than thirty drug interactions studies,” he continues. From the start, they asked: What would a prescribing physician want to know? What would a patient want to know?
The result is a “thick” label—much and varied data now rather than later. “We really put dolutegravir through its paces, so to speak. By doing that, I do think we came out with great results, a great package, which is the most important [result]. So when someone wants to prescribe the drug, they know all the different situations of where it fits in…,” he notes, affirming the importance of individualized therapy and any agent’s high adaptability to regimens. Most importantly, “what patients need are options,” says Dr. Pottage. “Even though people may succeed with the medicines we have now, and do go a long time with them, we need to keep turning out new options and keep trying to improve on that. We’re not interested in just putting out another Atripla, or another me-too drug. Atripla is a great drug! We don’t need to make a new one of that….We need some advances on that.” In this case, researchers considered Atripla’s tolerability problems and aimed to improve upon them while maintaining similar if not superior efficacy. “So our research aims to take the good things of existing therapies and then fix those things or show where improvements can be made.” ViiV is strongly committed to conducting additional studies on Tivicay. A Phase III study is currently underway to evaluate the safety of the drug in children under 12. And ViiV is seeking to submit regulatory filings on a single-pill, fixed dose combination containing dolutegravir, abacavir, and lamivudine in the U.S. and Europe by the end of 2013. Other single-tablet regimens are in early development as is a relative of dolutegravir called 744, an injectable integrase inhibitor in a long-acting formulation. “You would just come into the office or some location and you would get a shot, and then you wouldn’t have to come back for another one to three months,” says Dr. Pottage, elaborating on the vision for the ongoing research. It might be beneficial for those struggling with adherence, he adds. Like Tivicay, it sounds like another opportunity to consider: ViiV la différence. Chael Needle wrote about immunotherapy candidate AGS-004 in the August issue. A&U • SEPTEMBER 2013
illustration by Timothy J. Haines
Sustain & Maintain
with the help of a. toni young & ceg, the black treatment advocates network rolls out in d.c.
D.C., which has the highest rate of HIV prevalence in the nation, is experiencing dual, hard-hitting epidemics, simultaneously affecting African-American heterosexuals and African-American men who have sex with men, explains Young. D.C., she says, has been “ahead of the curve” when it comes to widespread testing, so a particular focus for the Advocates will be on nurturing that deep engagement with HIV/AIDS care. The need is urgent in D.C.: According to CEG, the majority of new HIV cases involve heterosexual sex, and 90.7 percent of those individuals are black. BTAN “really gives us the opportunity to train staff on the value of sustained care, not just what we frequently hear about, which is, test [individuals], link them to care, and everything is good and all of a sudden the gates will open and everybody will sing!” Linking to care and treatment, that is, cannot remain a onetime event; it needs to be realized as a recursive process, she says. Otherwise, its value may very well be lost on those in need. That value needs to be nurtured and intensified, and one way to go about, says Young, is “to increase the value that people have in community.” The shift away from thinking of HIV in purely individualized terms and toward thinking in terms of community viral load is key. Says Young: “If my community talks to that person [living with HIV/AIDS], that person gets to have a better understanding of their relationships to HIV, and HIV in their neighborhood, their community, their city, state, jurisdiction, and then in America. And that’s the beauty of BTAN because…it’s saying, ‘If I go into these communities and train folks I can impact the individual on the ground. But I definitely have the capacity to then do this expansive education to impact community viral load across the U. S. in Black communities.’” Each local member of the network designs and develops efforts according to different populations, settings, cultural groups, and individuals—and individuals in the context of their communities. Advocates ideally would disseminate the message across different social networks, suggests Young. At a house of worship, on the golf course—wherever you go to build community, HIV literacy can be there, too. Individuals living with HIV/AIDS who are aware of their positive status “may need multiple contacts, need multiple hits; they need
to be reinforced over and over about why this treatment is valuable long-term, why staying in care long-term is valuable,” she notes. Reaching out to as many people as possible has the potential to both scatter and, in doing so, strengthen the effect of education. Speaking from an Advocate perspective, she says: “I don’t know who is going to be the person who is going to guide you to HIV testing; I don’t know who the person is going to guide you to HIV treatment; I don’t know who the person is going to be your support system that says go back to the doctor, after nine months or nine years.” That’s why it’s important, says Young, for Advocates to engage as many people as possible with accurate, sound medical information based on up-to-date knowledge of the treatment cascade, and so on. “We can get to an end of the epidemic, but we have to make sure we’re giving the correct message, because that message can frequently get watered down.…” In this way, the project goes beyond touting “the end of AIDS” by teaching (and learning) how to accomplish that, and then companioning teaching with doing. “You have to do something! There’s no point in us sitting around all day training, going to a training or going to a seminar, if there is not a call to action at the end,” explains Young. And that call to action is a call to community. For more information, visit: www.BlackAIDS.org; www.BlackAids.org/programs/black-treatmentadvocates-network; www.Merck.com; and www.CommunityEducationGroup.org. Chael Needle is Managing Editor of A&U.
photo courtesy CEG/BTAN
e get to zero by getting people into care, getting them access to treatment, and making sure that they understand the value of treatment...but in order to do that we need to have the right people trained to deliver those messages,” says A. Toni Young, executive director of the Washington, D.C.-based Community Education Group (CEG), about reducing drop-offs at every step along the continuum of care. CEG recently became a local partner in the Black Treatment Advocates Network (BTAN), a nationwide initiative launched by the Black AIDS Institute, in partnership with Merck. D.C. is now the thirteenth city in the network, joining Houston, Los Angeles, and Miami, among others. National in scope, and ever-expanding, BTAN is responding to the disproportionate impact of the epidemic on Black communities. Committed to the idea that knowledge means little if it isn’t transformed into positive action, BTAN’s work involves training, networking, and mobilizing, as well as strengthening Black leadership; its goal: to improve HIV care and treatment for and with African Americans. BTAN helps the Advocates, as they are called, fine-tune their HIV literacy and then supports them in engaging their communities in education and mass mobilization efforts. The Network welcomes anyone willing to make a difference. One of BTAN’s goals is not simply to increase the numbers of those tested and linked to care, but to “sustain and maintain them in care,” as Young so nicely explains the strategy. According to the CDC, only one out of four HIV-positive individuals living in the U.S. successfully navigates the steps along the continuum of care—serostatus awareness, linking to care, staying in care, antiretroviral therapy, viral suppression. With more people aware of their status than linked to care, with more people linked to care than staying in care, and so on, a treatment cascade has formed. Young believes that BTAN is a vital and logical next-step, knowing what we know about how few are staying in care long enough to achieve their treatment goals. Along with youth, African Americans are least likely to receive ongoing care and treatment.
A&U • SEPTEMBER 2013
LouisvilleAIDSWalk 5K Run and Pet Walk
Sunday, October 13, 2013 @Waterfront Park
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National AIDS Memorial Quilt • Kid’s Activities • Pet Activities Food • Beverages • Entertainment and More!
will never be
new hep c data sharing may lead to more testing
ast year the U.S. Centers for Disease Control and Prevention (CDC) made a big stir in the medical community when it issued its recommendation that everyone in the Baby Boomer cohort be tested for hepatitis C, whether or not they have any symptoms or risk factors for the virus. The thinking was just being born between 1945 and 1965 was risk enough, what with blood transfusions or organ transplants that had no effective hepatitis screening before 1992, and recreational injection of drugs that could have led to a liver infection that has gone undetected all these years. More than seventy-five percent of American adults with hepatitis C are baby boomers, and infection rates were highest in the seventies and eighties, the CDC said. In June, an influential health advisory group that initially dismissed the CDC’s recommendation reversed itself and agreed that all baby boomers could benefit from an initial test for hepatitis C. The United States Preventive Services Task Force said that after reviewing some new studies and the public comments that there was a clear and growing effectiveness of treatment which boosted the case for screening people who don’t have any symptoms or risk factors, such as an entire generation of baby boomers. The task force’s preliminary recommendation in November, 2012, was grade C, meaning testing could be offered to select patients and would probably have a small benefit. The final recommendation has a grade B, suggesting that one-time hepatitis C screening for all adults born between 1945 and 1965 would have a moderate benefit. That B grade is enough, under the Affordable Care Act, for preventative services to be provided without co-payments from patients. Now one diagnostic testing service has announced a new collaboration with the CDC to help implement the Center’s recommendations by enhancing screening, diagnosis and medical intervention for the estimated 3.2 million Americans infected with hepatitis C.
Under an agreement, medical experts, scientists and health informatics experts from Quest Diagnostics and the CDC’s Division of Viral Hepatitis will share de-identified (patient identifiers removed) hepatitis C test results—in a HIPAA compliant manner, they emphasize—from the Quest Diagnostics Health Trends national clinical laboratory database. The de-identified data will include results of screening and confirmatory diagnostic tests as well as genotyping and viral load tests used by clinicians to manage treatment. Data will be evaluated to identify and track epidemiological trends in hepatitis C virus infection, testing and treatment, and evaluate how those trends differ based on gender, age, geography and clinical management. The organizations may jointly publish results of their research, such as in peer-reviewed publications and scientific conferences. There are three steps in the continuum of testing, before a patient gets into care: • An initial test for hepatitis C antibodies • A confirmation test of whether the patient is currently infected • A genotype test, to suggest the proper course of therapy for those who are infected By gathering data at each of these testing steps, Quest and the CDC will be able to see, among other demographic information, patterns in testing behavior. Not everyone who tests positive for the hepatitis C antibodies actually returns for a confirmation test, and many who test positive in the confirmation don’t return for the genotype test.
Quest’s data collection and data sharing with the CDC can help the medical community better understand who is less or more likely to show up, or not show up, at each of these stages, as well as data on viral loads and genotyping for those who make it through all three stages of testing, according to Rick Pesano, MD, PhD, Medical Director for Infectious Diseases and Immunology at Quest. “Quest is the first company to engage in this type of data sharing with the CDC, and I hope other companies will also consider collaborating like this,” Pesano told A&U. By analyzing demographic data of those who get tested—and those who don’t follow up at any stage of the testing and treatment continuum—Quest will help the CDC better target their hepatitis outreach and communication efforts, Pesano added. Much of this data will be published in medical journals, but there may be additional avenues for reaching doctors with the data and helping them understand what it means, Pesano said. “At this point, awareness of the necessity of testing this cohort, both for physicians and patients, is key to saving lives.” For more information about the data sharing, visit: QuestDiagnostics.com/HealthTrends. Larry Buhl wrote about how the Affordable Care Act will affect HCV care in the August Hep Talk. A&U • SEPTEMBER 2013
E R U T CUL S THE
Two Boys Kissing by David Levithan Knopf
New York Times bestselling author David Levithan creates a vision for change with his latest young adult novel. Two Boys Kissing delivers an intimate glimpse into the lives of seven teenage boys who navigate their sexuality, family dynamics, friendships, and solidarity. Craig and Harry decide to publicly set the world’s record for longest kiss—even though they are no longer a couple. But Craig’s parents must not find out he’s gay. Peter and Neil have been together for a year. They have slipped into that comfortable phase of coupledom but wonder if their relationship can last. Avery and Ryan meet at a gay prom and marvel at their instant attraction to each other. But Avery worries Ryan won’t accept his secret. And then there’s Cooper, whose emotional state deteriorates into self-destructive behavior. In the tradition of Nancy Garden’s groundbreaking 1982 novel Annie on My Mind, Levithan’s Two Boys Kissing revolutionizes LGBT young adult literature. Its unequivocal cover photo—two teenage boys kissing—is a first for young adult literature and has created much excitement, well before the book’s release date. The narrative style is also unique. Levithan tells the story via a Greek chorus of gay men lost to the AIDS epidemic. The chorus illuminates the continuous struggle the gay community has endured for decades, debunks stigmas about AIDS and homosexuality, and imparts wisdom for the gay youth of today—adding an additional layer of complexity to the multiple plotlines. Readers will engage with the well-crafted characters and enthralling, honest plot. Highly recommended for teens and adults, Levithan’s novel advocates for social change,
while encouraging communication about important issues that are often difficult to discuss without prompting. Two Boys Kissing is not only about accepting all forms of love; it is a celebration of love. —Sera Rivers
Bleeder: A Memoir by Shelby Smoak Michigan State University Press
The pacing of Shelby Smoak’s poignant memoir Bleeder is as measured as a heartbeat. He marks the passage of time with almost metronomic regularity. The month and year are recorded at the start of each chapter, and the book thrums with lyrical descriptions of the progression of the seasons. Taking place in North Carolina, the coastal imagery in Bleeder contributes to the book’s overall cadence. Tidal forces exert an almost imperceptible pull on the reader’s imagination, establishing a rhythm that underscores the staggering importance of time and the
role it plays in the author’s narrative. When the book opens, Shelby Smoak introduces himself as an eighteen-year-old hemophiliac who has just learned he is HIV-positive. The year is 1990. Abnormally low levels of clotting factors in the blood put hemophiliacs at risk for excessive or prolonged bleeding. Shelby Smoak was born in the early 1970s when the advent of clotting factor products radically changed the lives of hemophiliacs. They could now lead independent lives, giving themselves regular transfusions of clotting factors by injection. School, work, play—there was no downtime anymore, no delays in treatment. The condition was treatable, and life became manageable for hemophiliacs and their families. A medical breakthrough gave hemophiliacs a normal life expectancy, and a medical calamity made it so that nearly half of them had contracted HIV from tainted blood products by the mid-1980s. Impossible to pinpoint, it is likely Shelby became infected with HIV in the early eighties before a screening test became available, before he A&U • SEPTEMBER 2013
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had even turned twelve. In Bleeder, Shelby Smoak chronicles his life as a young man—he goes to college, falls in and out of love, lands his first real job, struggles with credit card debt, moves back in with his folks, puts in an obligatory stint as a bookseller at Barnes & Noble—all of which will seem achingly familiar to anyone who came of age in the 1990s. But Shelby is literally in a race against time because of his deteriorating health. The antiretroviral drug AZT gives him headaches while inducing nonstop vomiting, and his decision to stop taking it cheats him of time he doesn’t have to spare. The Food and Drug Administration is on the verge of approving protease inhibitors, but, in the meanwhile, Shelby loses weight and becomes increasingly fatigued. At the confluence of Cape Fear River and the Atlantic Ocean, he sits on a pier at night watching the “black, outgoing tide,” which he sees as a metaphor for his ebbing health. He develops thrush. His T-cell count drops while his viral load increases. He ages out of being covered by his parent’s insurance, yet his HIV status threatens his ability to
hold down a job as a teacher’s assistant at an elementary school. One year slides inexorably into the next, but the urgency mounts, and all of the clichés about the nature of time clamor to be heard in the reader’s head, creating dissonance and dramatic tension between hope and despair. In the final pages of his heartrending memoir Bleeder, Shelby Smoak concludes, “I consider how my life has depended so much on timing. My factor invented the same year I was born, that’s timing. My health falling in dangerous decline just when protease inhibitors and cocktail therapies swooped in to sustain me, that’s timing.” —Sally Hessney Sera Rivers is a freelance writer and writing coach. Publications include Thalo. com and “A Lonely Education” blog on Psychology Today. Visit SeraRivers.com for more information. Sally Hessney is a program assistant at a nonprofit organization, where one of the educational missions is to educate teenagers about the dangers of binge drinking, prescription drug abuse, distracted driving, STDs, and other consequential issues.
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here’s nothing like strolling through New York City and happening upon a flea market full of goodies, but one in particular attracts more-than-casual browsers and here’s why. The 27th Annual Broadway Flea Market & Grand Auction, free and open to the public in the heart of the theater district, never fails to offer a trove of theater keepsakes—more than fifty tables of out-of-print cast recordings, lost Playbills, signed memorabilia, costume sketches, props, and much more. Attendees also have the opportunity to meet their favorite Broadway show cast members and chat with their favorite celebrities at the Celebrity Autograph Table and Photo Booth, as well as bid on exclusive backstage experiences. Proceeds support Broadway Cares/Equity Fights AIDS, one of the nation’s leading industry-based, nonprofit AIDS fundraising and grant-making organizations. Date: September 22; time: 10 a.m.–7 p.m.; location: Shubert Alley and West 44th Street, New York, New York. (Kimpton Hotels is offering a rate at a fifteen-percent discount—and will donate $10 per night
to BC/EFA—for out-of-towners!) Also, don’t miss a dazzling one-night-only performance by two-time Tony Award winner (and BC/EFA Trustee) Chita Rivera to benefit Broadway Cares/Equity Fights AIDS. Chita: A Legendary Celebration offers a dazzling evening of talent to honor the triple threat’s eightieth birthday and her storied career, which includes performances in West Side Story, The Rink, Kiss of the Spider Woman, and Roundabout Theatre Company’s currently running revival of The Mystery of Edwin Drood. Directed by Graciela Daniele and written by Terrence McNally, the BC/EFA-produced show will also feature spectacular guest stars. For VIP ticket buyers, a gala reception will be held at Blue Fin, a premier spot for pre- and post-theater dining. Date: October 7; time: 8 p.m.; location: August Wilson Theatre, 245 West 52nd Street, New York, New York; tickets: $75 and up. For more information about either event, log on to: www.broadwaycares.org.
Restaurant & Lounge
A&U • SEPTEMBER 2013
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Left Field continued from page 26
ninety-eight percent of them have an exact match—or conservative amino-acid substitution—for the minimal essential “core” epitope KLIC to which the CLONE 3 antibody binds. In other words, Clone 3 epitope KLIC has the potential to elicit, in active vaccination, a protective antibody (“CLONE 3”) that broadly neutralizes ninety-eight percent of all known HIV strains. This is more than any other vaccine candidate whose study results have been published. Clearly this 2010 government data should have put the Clone 3 KLIC epitope at the front of the pack. But it didn’t—not even today, when HIV strains now total 4,009. Yet Clone 3 still holds its ninety-eight percent position. Later in September 2010, I wrote a Left Field expressing my bafflement, followed by a longer piece posted at Bilerico Project in October. I had concluded that Dr. Cotropia’s discovery was being viewed as a “disruptive technology.” Humanist-sounding statements by the AIDS industry notwithstanding, a cost-effective vaccine that saves millions of people from being infected would eliminate the industry’s golden chance to sell many
years of ARV drug treatments to these millions (or to their governments, or their insurance providers) after they get infected. And, as I commented in the Bilerico piece: “The U.S. government is anxious to protect its own vested interest in ARV cash-flow. The FDA collects millions in user fees from pharmaceutical companies. The Dept. of Treasury collects additional taxes on pharmaceuticals. Plus there are royalties from medical inventions created by government scientists.” So I wonder what the government would have done with Cotropia’s patent—if anything—if they had won their 1999 legal battle. Dr. Cotropia and Fellegy have asked me if I would accept a commission to write a nonfiction book about their story. I said yes. It’s a huge story—one that deserves to be told. The story is still happening, and I’m still hoping that someone will show up who gives a damn about humanity and has the $500 million that is needed to bring this pharma product through clinical trials to market. Meanwhile, every year that there’s still no AIDS vaccine on the global market, nearly 2 million people a year around the world—children, women and men—die needlessly of AIDS. Somebody will have to explain to me why 2 million deaths a year is an acceptable trade-off for the profits being made on ARVs. So herewith my disclosure that I’m taking
sides with a particular approach to the science and medicine of ending AIDS—and that I will be accepting payment for my professional book-author skills. I’m doing this because I’m convinced of Clone 3’s possible future. Indeed, BioClonetics is aiming for broader development. The CLONE 3 antibody also has potential as a passive immunotherapy, to treat those infected with HIV/AIDS without the toxicity dangers presented by ARV drugs. Moreover, Dr. Cotropia tells me that the 1989 discovery has possible applications for diseases caused by other retroviruses as well, in both humans and animals. All in all, this could be an important horizon in medical history—I’d like to be there as that horizon is crossed. Meanwhile—many thanks to publisher David Waggoner for the opportunity to publish in these pages. Thanks also to the A&U staff for their publishing know-how and TLC, especially managing editor Chael Needle and art director Timothy J. Haines. Last but not least, thanks to all you A&U readers who have hung in there with me for so many years, through so many twists and turns of other AIDS stories that needed to be told. Author of fiction bestsellers and provocative commentary, Patricia Nell Warren has her writings archived at www.patricianellwarren.com. Reach her by e-mail at email@example.com.
A&U • SEPTEMBER 2013
The Thomas O. Cash
HIV/AIDS Walk To benefit the programs and services at The Southern NH HIV/AIDS Task Force 12 Amherst Street Nashua NH 03064 603-595-8464 1-800-942-7437 603-595-1480 aidstaskforcenh.org
September 7, 2013 Greeley Park Band Shell Registration beginning at 10 am Walk beginning at 11 am
Check out for more information and to download pledge sheets and to sign up with the Task Force First Giving page and start your own online walker pledge sheet!
For more information contact
Magaly Rios at 603-595-8464, ext. 12 2013 Walk Sponsors and Contributors
SEPTEMBER 2013 â€˘ A&U
photos by Alina Oswald
(re)Presenting AIDS A lovely, late-summer evening and an honest conversation about arts, AIDS, and cultural institutions presenting HIV/AIDS-related exhibitions brought people out of their homes and into the impressive Skylight Room at The Graduate Center, CUNY, to attend a public forum, “(re)Presenting AIDS: Culture & Accountability,” hosted by Visual AIDS and the Pop-Up Museum of Queer History. The forum was, in part, inspired by Clockwise from top left: Hunter O’Hanian, museum director of reactions (including a critical New York Times op-ed by Leslie-Lohman Museum of Gay and Lesbian Art, answers the Hugh Ryan, writer and founding director of the Pop-Up audience, as grenAIDS artist Kia Benbow (far left) and Visual Museum of Queer History) to a recent AIDS exhibition AIDS executive director Nelson Santos observe the interactive at New-York Historical Society that many felt failed to tell discussion; one of the audience members addresses the panel; a young individual from the audience volunteers to read a statethe true story of the pandemic. ment from artists/activists Peter Cramer and Jack Waters, while On August 20, the Skylight Room opened its doors moderator Ann Northrop watches; Dirty Looks assistant director to invite attendees to look up and open their eyes to Karl McCool watches as Amy Sadao, who is the Daniel W. Dietrich the majestic sky of midtown Manhattan, and their ears II Director of the Institute of Contemporary Art at the University of to the voices of distinguished members of the panel, Pennsylvania, answers questions from the audience which included Hunter O’Hanian, museum director of Leslie-Lohman Museum of Gay and Lesbian Art; “NOT OVER: 25 years of Visual AIDS” curator Kris Nuzzi; Jason Baumann, New York Public Library LGBT Collections Strategist; grenAIDS artist Kia Benbow; Hugh Ryan; and Nelson Santos, Visual AIDS executive director. The panel took questions from the live audience, and also from Twitter (#ongoingAIDS), starting an interactive and engaging discussion about the way HIV/AIDS should be represented in the public sphere, the amount of history being “created” rather than “displayed” by institutions, the engagement between these art and historical institutions and the communities whose stories they’re telling, and, in a time when AIDS is still “ongoing and going on,” our role in ensuring that “the stories that need to be shared are told and heard by those who need them the most.” For more information, log on to www.visualaids.org.
A&U • SEPTEMBER 2013
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