T reat i ng A n x iet y Without Meds
+
Is Truvada the Vaccine? +
T he Ne w At-Home Test
H E A L T H + S P I R I T + C U L T U R E + L I F E
THEIR LONGTIME COMPANION
Gay men tell us what it’s like to live with HIV for over two decades
HIV AMONG LESBIANS
Survivor Merle “Conscious” Soden explains
DEBRA MESSING
The Smash star’s AIDS-fighting journey to Zambia
FROM ANARCHY TO ACTIVISM september/october 2012
www.hivplusmag.com
Using his fame to urge men to get tested for HIV, Sons of Anarchy’s Rockmond Dunbar talks health, happiness, and the hit series
Model
INDICATIONS ISENTRESS (raltegravir) 400mg Film-Coated Tablets 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 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, 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 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: headache, trouble sleeping, nausea, and tiredness. Less common side effects include: weakness, stomach pain, dizziness, depression, and suicidal thoughts and actions.
I am a go-getter. I am romantic. I am a world traveler. I am HIV positive. You are special, unique, and different from anyone else. And so is your path to managing HIV. When you’re ready to start HIV therapy, talk to your doctor about a medication that may fit your needs and lifestyle. In a clinical study lasting 156 weeks, patients being treated with HIV medication for the first time who took ISENTRESS (raltegravir) plus Truvada: Had a low rate of side effects — The most common side effects of moderate to severe intensity (that interfered with or kept patients from performing daily activities) were insomnia (4%), headache (4%), nausea (3%), and tiredness (2%) At week 144, cholesterol was measured and patients who took ISENTRESS plus Truvada experienced less effect on LDL cholesterol (“bad” cholesterol): — Cholesterol increased an average of 7 mg/dL with ISENTRESS plus Truvada versus 22 mg/dL with Sustiva plus Truvada — When they began the study, the average LDL cholesterol of patients on ISENTRESS plus Truvada was 97 mg/dL versus 92 mg/dL for those on Sustiva plus Truvada
Ask your doctor about ISENTRESS. Not sure where to start? Visit isentress.com/questions 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 (Prezista) together, than with either drug separately, but was generally mild. Tell your doctor about all your medical conditions, including if you are pregnant or plan to become pregnant. It is not known if ISENTRESS can harm your unborn baby. Also tell your doctor if you are breastfeeding or plan to breastfeed. You should not breastfeed if you have HIV because of the risk of passing HIV to your baby. Tell your doctor about all the medicines you take, including prescription medicines like rifampin (a medicine used to treat infections such as 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 1-800-FDA-1088. Please read the Patient Information on the adjacent page for more detailed information.
Need help paying for ISENTRESS? Call 1-866-350-9232 Copyright © 2012 Merck Sharp & Dohme Corp., a subsidiary of Merck & Co., Inc. All rights reserved. INFC-1042697-0000 06/12 Sustiva is a registered trademark of Bristol-Myers Squibb Brands mentioned are the trademarks of their respective owners.
Patient Information ISENTRESS Ž (eye sen tris) (raltegravir) Film-Coated Tablets ISENTRESS Ž (eye sen tris) (raltegravir) Chewable 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 and children 2 years of age and older 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). It is not known if ISENTRESS is safe and effective in children under 2 years of age. 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: t Do not share needles or other injection equipment. t Do not share personal items that can have blood or body fluids on them, like toothbrushes and razor blades. t 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: t IBWF MJWFS QSPCMFNT t have phenylketonuria (PKU). ISENTRESS Chewable Tablets contain phenylalanine as part of the artificial sweetener, aspartame. The artificial sweetener may be harmful to people with PKU. t IBWF BOZ PUIFS NFEJDBM DPOEJUJPOT t 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. t 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: t SJGBNQJO 3JGBEJO 3JGBNBUF 3JGBUFS 3JNBDUBOF B NFEJDJOF DPNNPOMZ VTFE 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? t Take ISENTRESS exactly as prescribed by your doctor. t :PV TIPVME TUBZ VOEFS UIF DBSF PG ZPVS EPDUPS XIJMF UBLJOH *4&/53&44 t Do not change your dose of ISENTRESS, switch between the film-coated tablet and the chewable tablet or stop your treatment without talking with your doctor first. t 5BLF *4&/53&44 CZ NPVUI XJUI PS XJUIPVU GPPE t *G ZPVS DIJME JT UBLJOH *4&/53&44 ZPVS DIJME T EPDUPS XJMM EFDJEF UIF SJHIU EPTF CBTFE PO ZPVS DIJME T BHF BOE XFJHIU t *4&/53&44 $IFXBCMF 5BCMFUT NBZ CF DIFXFE PS TXBMMPXFE XIPMF t *4&/53&44 'JMN $PBUFE 5BCMFUT NVTU CF TXBMMPXFE XIPMF t *G ZPV NJTT B EPTF UBLF JU BT TPPO BT ZPV SFNFNCFS *G ZPV EP OPU SFNFNCFS VOUJM JU 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. t If you take too much ISENTRESS, call your doctor or go to the nearest emergency room right away. t %P OPU SVO PVU PG *4&/53&44 (FU ZPVS *4&/53&44 SFmMMFE GSPN ZPVS EPDUPS PS QIBSNBDZ before you run out. What are the possible side effects of ISENTRESS? ISENTRESS can cause serious side effects including: t 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 t 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. t Phenylketonuria (PKU). ISENTRESS Chewable Tablets contain phenylalanine as part of the artificial sweetener, aspartame. The artificial sweetener may be harmful to people with PKU. The most common side effects of ISENTRESS include: t IFBEBDIF t OBVTFB t USPVCMF TMFFQJOH t UJSFEOFTT Less common side effects include: t XFBLOFTT t EFQSFTTJPO t TUPNBDI QBJO t TVJDJEBM UIPVHIUT BOE BDUJPOT t EJ[[JOFTT 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. 5IFTF BSF OPU BMM UIF QPTTJCMF TJEF FGGFDUT PG *4&/53&44 'PS NPSF JOGPSNBUJPO BTL ZPVS doctor or pharmacist. $BMM ZPVS EPDUPS GPS NFEJDBM BEWJDF BCPVU TJEF FGGFDUT :PV NBZ SFQPSU TJEF FGGFDUT UP '%" BU '%" How should I store ISENTRESS? 'JMN $PBUFE 5BCMFUT t 4UPSF *4&/53&44 'JMN $PBUFE 5BCMFUT BU SPPN UFNQFSBUVSF CFUXFFO ¥' UP ¥' ¥$ UP ¥$ Chewable Tablets: t 4UPSF *4&/53&44 $IFXBCMF 5BCMFUT BU SPPN UFNQFSBUVSF CFUXFFO ¥' UP ¥' ¥$ UP ¥$ t Store ISENTRESS Chewable Tablets in the original package with the bottle tightly closed. t ,FFQ UIF ESZJOH BHFOU EFTJDDBOU JO UIF CPUUMF UP QSPUFDU GSPN NPJTUVSF 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. 'PS NPSF JOGPSNBUJPO HP UP XXX *4&/53&44 DPN PS DBMM What are the ingredients in ISENTRESS? ISENTRESS Film-Coated Tablets: Active ingredient: raltegravir Inactive ingredients: microcrystalline cellulose, lactose monohydrate, calcium phosphate EJCBTJD BOIZESPVT IZQSPNFMMPTF QPMPYBNFS DPOUBJOT CVUZMBUFE hydroxytoluene as antioxidant), sodium stearyl fumarate, magnesium stearate. The film coating contains: QPMZWJOZM BMDPIPM UJUBOJVN EJPYJEF QPMZFUIZMFOF HMZDPM UBMD red iron oxide and black iron oxide. ISENTRESS Chewable Tablets: Active ingredient: raltegravir Inactive ingredients: hydroxypropyl cellulose, sucralose, saccharin sodium, sodium citrate dihydrate, mannitol, red iron oxide (100 mg tablet only), yellow iron oxide, monoammonium HMZDZSSIJ[JOBUF TPSCJUPM GSVDUPTF OBUVSBM BOE BSUJmDJBM nBWPST PSBOHF CBOBOB BOE NBTLJOH that contains aspartame), crospovidone, magnesium stearate, sodium stearyl fumarate, ethylcellulose 20 cP, ammonium hydroxide, medium chain triglycerides, oleic acid, IZQSPNFMMPTF D1 1&( 5IJT 1BUJFOU *OGPSNBUJPO IBT CFFO BQQSPWFE CZ UIF 6 4 'PPE BOE %SVH "ENJOJTUSBUJPO Distributed by: Merck Sharp & Dohme Corp., a subsidiary of Merck & Co., Inc. Whitehouse Station, NJ 08889, USA Revised April 2012 6411* 5 3 $PQZSJHIU ª .FSDL 4IBSQ %PINF $PSQ B TVCTJEJBSZ PG Merck & Co., Inc. All rights reserved. */'$ 6 4 1BUFOU /PT 64
in this issue
September+October 2012
healthy doses 6 QUICK SWAB, QUICK RESULTS A new rapid at-home test will prevent thousands of HIV infections each year.
8 TAKING CARE
20
Too many people don’t see their HIV specialist.
8 MIND-ALTERING BEHAVIORS Pregnant, poor, and positive is often a recipe for (untreated) depression.
9 A PILL THAT PREVENTS HIV? Truvada becomes the first drug approved for HIV prevention.
around the globe 14 LIFE’S A BALL Scenes from this year’s Life Ball, the largest and most glamorous AIDS fundraising event in Europe.
case studies 38 Is Anyone Immune to HIV? A genetic mutation that blocks HIV may hold the key to a cure.
40 the deadly drug war Activists call on Congress to change drug laws in order to fight HIV.
26
48
40 NEWS YOU CAN USE All the latest medical news in one spot.
41 CURED OR CLEARED? They have undetectable viral loads, so why are these men not considered cured?
41 UNDER THE SEA HIV scientists seek answers in the ocean.
cover: Miranda Penn Turin/FOX; this page (clockwise from top): courtesy FX NE T WORK ; COURTESY psi; COURTESY SUBJEC T
columns 44 mind + mood Tired of taking meds? Here’s how to snap out of it.
46 BEDSIDE MANNER One physician rethinks the debate over same-sex marriage.
ALSO: 42 YOU 2.0: Advice on how to eat well and battle anxiety without meds.
20 Officer & A Gentle Man
Sons of Anarchy star Rockmond Dunbar sets a new standard for celebrity HIV activism.
26 Longtime Companions
Read the inspiring stories of four gay men who’ve lived with HIV for decades.
34 Hello, My Name is Conscious
One lesbian tells her story of surviving assault, drug abuse, and HIV to inspire others. .
48 Ask & Tell: Debra Messing
An interview with the Smash and Will & Grace star, whose latest role is HIV heroine.
Editor's Letter
Editor in chief
Diane Anderson-Minshall
managing Editor Neal
Broverman Scott McPherson digital Editor Michelle Garcia copy editor Trudy Ring ASSOCIATE ART DIRECTOR Boo Jarchow
creative director
manager, editorial and marketing operations
evp, group publisher
Joe Valentino Steven O’Brien Shamila Siddiqui
INTEGR ATED advertising MANAGEr senior manager, social media
senior managers, integr ated marketing
Robbie Imes, Kevin Stec INTEGR ATED MARKETING MANAGER
Charles Culbert
Stephanie Block
director, public relations &
HERE MEDIA chairman
Stephen P. Jarchow ceo Paul Colichman cfo Tony Shyngle
Mark Umbach Robert Hébert senior director, client services Stewart Nacht
corporate communications interactive art director
executive vice presidents and General managers
Stephen Macias, Bernard Rook evp, publishing Joe Landry chief performance officer Robert Ames advocate group editorial director Matthew Breen senior vice presidents Christin Dennis, John Mongiardo, Alex Paul, Josh Rosenzweig vice presidents Greg Brossia, Eric Bui, Steven Capone, Mike Dubin, Justin Garrett lead web architect & developer Peter Di Maso creative director, digital media Dave Johnson director, digital media, development Lisa Brown senior online producer Christopher Harrity web production coordinator Joe Okonkwo
Jeff Lettiere Argus Galindo
Director of circulation fulfillment manager
Production Manager
John Lewis Heidi Medina
Advertising Production Manager
advertising & subscriptions offices 120 West 45th Street, 23rd floor, New York, New York 10036-4041 Phone (212) 242-8100 • Advertising Fax (212) 242-8338 Subscriptions (212) 242-8100, Ext. 19 • Subscriptions Fax (212) 242-1344 editorial offices 10990 Wilshire Blvd., Penthouse Suite, Los Angeles, California 90024 Phone (310) 806-4288 • Fax (310) 806-4268 • Email mail@HIVPlusMag.com DISTRIBUTE HIV PLUS FOR FREE AT YOUR OFFICE OR FACILITY AIDS service organizations, community-based groups, pharmacies, physicians’ offices, and other qualifying agencies can request bulk copies for FREE distribution at your office or facility. Log on to HIVPlusMag.com and select “organization copies” on the “subscribe” link at the top of the page to download a copy request form. There is a 10-copy minimum. FREE INDIVIDUAL SUBSCRIPTIONs HIV Plus magazine is now available FREE to individual subscribers. Subscribe and get a digital copy of each magazine delivered to the privacy of your computer six times per year. We require only your email address to initiate delivery. You may also share your copies with friends. To sign up, just log on to HIVPlusMag.com and select “individual subscriptions” on the “subscribe” link at the top of the page. NEED SUBSCRIPTION HELP? If you have any questions or problems with your bulk or individual magazine delivery, just email our circulation department at Jeff.Lettiere@HereMedia.com.
Longtime Companion
I
didn ' t get to experience the sexual revolution as an adult, but as Gay Men's Health Crisis leader Marjorie J. Hill says in the AIDS film 30 Years from Here, "Everybody was getting some." Until, of course, gay and bisexual men started getting HIV. Educators have worked hard to remind us that HIV is not a "gay" crisis, it's a human crisis. But still, the rates of HIV among gay and bi men—especially those who are African-American—are still startlingly high. So for this issue we talked with several gay men (see p. 26) who tested positive for HIV two or three decades ago. It's exciting to see that they're not only still alive but, in many ways, thriving. I remember seeing the early AIDS film Longtime Companion and sobbing because the men dying on-screen were so like the men dying in my life. What's wonderful now is that while AIDS does still kill, it's killing far fewer people than it was a decade ago and that hope is on the horizon for both a vaccine and a cure, admittedly with some caveats.
HIV Plus (ISSN 1522-3086) is published bimonthly by Here Publishing Inc., 10990 Wilshire Blvd., Penthouse Suite, Los Angeles, CA 90024. HIV Plus is a registered trademark of Here Media Inc. Entire contents © 2012 by Here Publishing Inc. All rights reserved. Printed in the USA.
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hiv plus
• september /october 2012
Diane Anderson-Minshall Editor in Chief
KINA WILLIAMS
what’s your story? Do you have an interesting story about yourself or someone you know that you want to share? You might be a candidate for a profile in one of our departments or another section. We want to hear from you, and we want to know what you’ve been up to. So email us at mail@HIVPlusMag.com or write us at HIV Plus, 10990 Wilshire Blvd., Penthouse Suite, Los Angeles, CA 90024. We’ll even take faxes at (310) 806-4268.
healthy doses
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Quick Swab, Quick Results
orasure technologies
A new rapid at-home test could help prevent thousands of HIV infections each year
the waiting period, anxiety, and denial are among the many reasons some people don’t get tested for HIV. OraQuick, which is considered by many to be the next step in the fight against the virus, may change that. In July, the Food and Drug Administration approved OraQuick, the first at-home test that will let users learn their HIV status right away—just like with a pregnancy test. The FDA agreed that the OraQuick InHome HIV Test would encourage more people to learn their status and, if they’re positive, take preventive measures to ensure they don’t spread HIV. The Centers for Disease Control and Prevention estimates that 20% of Americans with HIV, or about 240,000 people, are unaware they are positive. Because these people don’t know their status, they cause between 54% and 70% of new HIV infections each year. The new product is a version of the professionally administered OraQuick Advance Test, an oral swab that provides results in 20 minutes, which the FDA approved in 2004. Since then its maker, OraSure Technologies, has sold nearly 25 million Advance Tests to hospitals, community-based organizations, medical clinics, and physician offices. OraSure Technologies CEO Douglas Michels said the at-home test, which is expected to cost less than $60 at pharmacies and other retail outlets, will be a breakthrough in health care. “For the first time ever, individuals will have access to an in-home oral test that will empower them to learn their HIV status in
the comfort of their home and obtain referral to care if needed,” Michels said. “This new inhome rapid test—the same test doctors have used for years—will help individuals at risk for HIV who otherwise may not test in a professional or clinical setting.” One problem with the at-home test, however, is its accuracy. Currently the test administered by medical professionals is 99% accurate in detecting HIV, but the consumer version has a 93% accuracy rate. The test would miss about 3,800 HIV-positive diagnoses a year but correctly identify 45,000 people with the virus. “We shouldn’t let the perfect be the enemy of the good, and this is an additional option,” said, Francisco Rentas, director of the Armed Services Blood Program and a member of an FDA advisory panel that recommended approval of the test, according to Businessweek. The product will come with an information sheet noting that it may produce some inaccurate results and urging users to follow up with a doctor, and OraSure will make counselors available by phone around the clock. The home test could still prevent 4,000 new transmissions of the virus each year, based on sales projections. And there is demand for an easily available rapid test. A recent study found that 84% of gay and bisexual men say they would administer a self-test if a proper kit were available. The other available at-home kits, such as Home Access Health Corp.’s Express HIV Test System, require users to send blood samples to a lab, while OraQuick’s results are available almost immediately. —Michelle Garcia
september /october 2012 •
hiv plus
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STATUS SYMBOLS healthy doses
Mind-Altering Behaviors
Pregnant, poor, and HIV-positive is often a recipe for (untreated) depression
Taking Care
Too many people don’t see their HIV specialist hiv is like no other condition. But a new study found that only 20% of HIV-positive Americans consistently utilize health care tailored specifically to their disease. A comprehensive study published in the Journal of Acquired Immune Deficiency Syndromes tracked nearly 23,000 people who received HIV care between 2001 and 2009. It found that many patients failed to keep up with specialized HIV care after they were diagnosed. A full 22% of patients never sought any care from an HIV doctor or clinic. The investigators defined three measures of HIV care: establishment of care by going to a follow-up appointment six or more months after being diagnosed;
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• september /october 2012
retention of care by having two or more follow-up appointments a year at least 90 days apart; and loss of care by going a year or more without seeking medical attention. The ramifications of avoiding specific care are serious; researchers have connected the phenomenon with reduced drug adherence and higher mortality rates. “A minority of [people living with HIV] established and consistently engaged in HIV outpatient care,” wrote the study’s authors, who are part of the HIV Research Network. “These results suggest that our health care system faces significant challenges in providing continuous, long-term care to the majority of the HIV-infected population.” —Neal Broverman
Even though low-income HIV-positive pregnant women are prone to depression, many are not seeking help for the potentially fatal mental illness. Medicaid, the government health program aimed primarily at low-income pregnant women, parents, children, and disabled adults, provides mental health services, but often the people who need them the most are not utilizing them. That’s what researchers at the University of Michigan and Ohio State University found recently when they gathered information on 650 pregnant HIV-positive women on Medicaid. Only 28% of the women were being treated for depression, though the researchers believe many more are suffering from it, especially African-American women. Previous studies show black women are less likely to seek treatment or report symptoms of depression; a higher percentage of African-American women also report general mistrust of doctors. “We need to work with health advocates in the African-American community to identify interventions and approaches toward solving this grave issue,” University of Michigan College of Pharmacy associate professor Rajesh Balkrishnan says, adding that depression can lead to substance abuse or suicide. Balkrishnan and his fellow researchers are urging Medicaid doctors to screen all HIV-positive pregnant women for depression instead of simply relying on their patients to inform them they’re suffering from symptoms. —N.B.
A Pill That Prevents HIV?
opposite page: photos.com (2); this page (from top): courtesy bodyandsoul.org, courtesy gilead sciences
Truvada becomes the first drug approved for HIV prevention
the food and drug Administration in July approved the prescription drug Truvada for use in HIV prevention, making it the first medication OK’d for preventing, not just treating, HIV. Truvada is already widely used to treat HIV, but studies have indicated that it can help keep people from contracting the virus. The FDA approved its use by HIV-negative people who are at high risk of acquiring HIV. “Today’s approval marks an important milestone in our fight against HIV,” said FDA commissioner Margaret Hamburg, MD. “Every year, about 50,000 U.S. adults and adolescents are diagnosed with HIV infection, despite the availability of prevention methods and strategies to educate, test, and care for people living with the disease. New treatments as well as prevention methods are needed to fight the HIV epidemic in this country.” The FDA is changing the warning literature boxed with Truvada to emphasize that those using it for prevention need to be confirmed as HIV-negative and Allen tested for the virus every three months. The agency is also starting a training and education program to help doctors inform their patients about the necessity of adhering to the recommended dose, engaging in safer-sex practices, receiving counseling, and getting tested regularly as well as their small but real risk of still
contracting HIV while on the drug. Some doctors have already been prescribing Truvada off-label for prevention to the HIV-negative partners of HIV-positive people, but they did so at their own discretion. FDA approval now allows its maker, Gilead Sciences, to explicitly market the drug for the purpose of prevention. Truvada, a combination of the drugs Emtriva (emtricitabine) and Viread (tenofovir), is one of the class of drugs called nucleoside reverse transcriptase inhibitors, so called for the way in which it suppresses replication of HIV in infected people. AIDS activists and service providers were not universally enthusiastic about Truvada’s approval for preventive purposes, expressing concerns about adherence, side effects, and declining condom use. Michael Weinstein, president of the Los Angeles–based AIDS Healthcare Foundation, issued a statement calling the action “completely reckless and a move that will ultimately set back years of HIV prevention efforts.” Numerous others, however, said Truvada for prevention is a necessary additional weapon in the fight against HIV. It “won’t end AIDS by itself, but we certainly can’t end the HIV epidemic without it,” San Francisco AIDS Foundation spokesman James Loduca told the San Francisco Chronicle. —Trudy Ring
Work of Honor
A woman dedicated to helping people with HIV gets the royal treatment Celebrities like Sir Ian McKellen (who was knighted in 1991) aren’t the only people to be honored by British monarchs. Philanthropists, scholars, and industrialists have all been inducted into the prestigious Order of the British Empire, and the recently announced list of this year’s honorees includes Emma Elizabeth Colyer, director of the U.K. charity Body & Soul, who was named a Member of the Order of the British Empire, or MBE, in June. She launched the nonprofit 16 years ago and has been helping people with HIV of all ages not only live with the virus but also thrive. Among its many works, Body & Soul launched that country’s first support group for kids under 12 who are affected by HIV in some way. “I see young people who are coping with all sorts of other adversities in life…and they can’t be open about their status,” she told the Daily Telegraph. “But then I see them overcoming that and achieving far beyond so many other young people that don’t have even some of those challenges.” Colyer said she feels like the honor is a stamp of approval, which will only motivate Body & Soul’s staff and volunteers to keep helping those in need. —Michelle Garcia
Gilead’s Truvada
september /october 2012 •
hiv plus
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ABOUT PREZISTA
®
PREZISTA® is always taken with and at the same time as ritonavir (Norvir ®), in combination with other HIV medicines for the treatment of HIV infection in adults. PREZISTA® should also be taken with food. • The use of other medicines active against HIV in combination with PREZISTA®/ritonavir (Norvir ®) may increase your ability to fight HIV. Your healthcare professional will work with you to find the right combination of HIV medicines • It is important that you remain under the care of your healthcare professional during treatment with PREZISTA® PREZISTA® does not cure HIV infection or AIDS and you may continue to experience illnesses associated with HIV-1 infection, including opportunistic infections. You should remain under the care of a doctor when using PREZISTA.® Please read Important Safety Information below, and talk to your healthcare professional to learn if PREZISTA® is right for you.
IMPORTANT SAFETY INFORMATION What is the most important information I should know about PREZISTA®? • PREZISTA® can interact with other medicines and cause serious side effects. See “Who should not take PREZISTA®?” • PREZISTA® may cause liver problems. Some people taking PREZISTA,® together with Norvir ® (ritonavir), have developed liver problems which may be life-threatening. Your healthcare professional should do blood tests before and during your combination treatment with PREZISTA.® If you have chronic hepatitis B or C infection, your healthcare professional should check your blood tests more often because you have an increased chance of developing liver problems • Tell your healthcare professional if you have any of these signs and symptoms of liver problems: dark (tea-colored) urine, yellowing of your skin or whites of your eyes, pale-colored stools (bowel movements), nausea, vomiting, pain or tenderness on your right side below your ribs, or loss of appetite • PREZISTA® may cause a severe or life-threatening skin reaction or rash. Sometimes these skin reactions and skin rashes can become severe and require treatment in a hospital. You should call your healthcare professional immediately if you develop a rash. However, stop taking PREZISTA® and ritonavir combination treatment and call your healthcare professional immediately if you develop any skin changes with these symptoms: fever, tiredness, muscle or joint pain, blisters or skin lesions, mouth sores or ulcers, red or inflamed eyes, like “pink eye.” Rash occurred more often in patients taking PREZISTA® and raltegravir together than with either drug separately, but was generally mild Who should not take PREZISTA ? ®
• Do not take PREZISTA® if you are taking the following medicines: alfuzosin (Uroxatral®), dihydroergotamine (D.H.E.45,® Embolex,® Migranal®), ergonovine, ergotamine (Cafergot,® Ergomar ®), methylergonovine, cisapride (Propulsid®), pimozide (Orap®), oral midazolam, triazolam (Halcion®), the herbal supplement St. John’s wort (Hypericum perforatum), lovastatin (Mevacor,® Altoprev,® Advicor ®), simvastatin (Zocor,® Simcor,® Vytorin®), rifampin (Rifadin,® Rifater,®
Rifamate,® Rimactane®), sildenafil (Revatio®) when used to treat pulmonary arterial hypertension, indinavir (Crixivan®), lopinavir/ ritonavir (Kaletra®), saquinavir (Invirase®), boceprevir (Victrelis™), or telaprevir (Incivek™) • Before taking PREZISTA,® tell your healthcare professional if you are taking sildenafil (Viagra,® Revatio®), vardenafil (Levitra,® Staxyn®), tadalafil (Cialis,® Adcirca®), atorvastatin (Lipitor ®), rosuvastatin (Crestor ®), pravastatin (Pravachol®), or colchicine (Colcrys,® Col-Probenecid®). Tell your healthcare professional if you are taking estrogen-based contraceptives (birth control). PREZISTA® might reduce the effectiveness of estrogen-based contraceptives. You must take additional precautions for birth control, such as condoms This is not a complete list of medicines. Be sure to tell your healthcare professional about all the medicines you are taking or plan to take, including prescription and nonprescription medicines, vitamins, and herbal supplements. What should I tell my doctor before I take PREZISTA®? • Before taking PREZISTA,® tell your healthcare professional if you have any medical conditions, including liver problems (including hepatitis B or C), allergy to sulfa medicines, diabetes, or hemophilia • Tell your healthcare professional if you are pregnant or planning to become pregnant, or are breastfeeding — The effects of PREZISTA® on pregnant women or their unborn babies are not known. You and your healthcare professional will need to decide if taking PREZISTA® is right for you — Do not breastfeed. It is not known if PREZISTA® can be passed to your baby in your breast milk and whether it could harm your baby. Also, mothers with HIV should not breastfeed because HIV can be passed to your baby in the breast milk What are the possible side effects of PREZISTA®? • High blood sugar, diabetes or worsening of diabetes, and increased bleeding in people with hemophilia have been reported in patients taking protease inhibitor medicines, including PREZISTA® • Changes in body fat have been seen in some patients taking HIV medicines, including PREZISTA.® The cause and long-term health effects of these conditions are not known at this time • Changes in your immune system can happen when you start taking HIV medicines. Your immune system may get stronger and begin to fight infections that have been hidden • The most common side effects related to taking PREZISTA® include diarrhea, nausea, rash, headache, stomach pain, and vomiting. This is not a complete list of all possible side effects. If you experience these or other side effects, talk to your healthcare professional. Do not stop taking PREZISTA® or any other medicines without first talking to your healthcare professional 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 refer to the ritonavir (Norvir ®) Product Information (PI and PPI) for additional information on precautionary measures. Please read accompanying Patient Information for PREZISTA® and discuss any questions you have with your doctor.
28PRZDTC0288R8
PREZISTA® (darunavir) is a prescription medicine. It is one treatment option in the class of HIV (human immunodeficiency virus) medicines known as protease inhibitors.
IS THE PREZISTA
®
EXPERIENCE RIGHT FOR YOU?
There is no other person in the world who is exactly like you. And no HIV treatments are exactly alike, either. That’s why you should ask your healthcare professional about PREZISTA® (darunavir). Once-Daily PREZISTA® taken with ritonavir and in combination with other HIV medications can help lower your viral load and keep your HIV under control over the long term. In a clinical study* of almost 4 years (192 weeks), 7 out of 10 adults who had never taken HIV medications before maintained undetectable† viral loads with PREZISTA® plus ritonavir and Truvada.® Find out if the PREZISTA® EXPERIENCE is right for you. Ask your healthcare professional and learn more at DiscoverPREZISTA.com Please read the Important Safety Information and Patient Information on adjacent pages.
Snap a quick pic of our logo to show your doctor and get the conversation started. *A randomized open label Phase 3 trial comparing PREZISTA®/ritonavir 800/100 mg once daily (n=343) vs. Kaletra®/ritonavir 800/200 mg/day (n=346). †Undetectable was defined as a viral load of less than 50 copies per mL. Registered trademarks are the property of their respective owners.
Janssen Therapeutics, Division of Janssen Products, LP © Janssen Therapeutics, Division of Janssen Products, LP 2012 06/12 28PRZ12036G
IMPORTANT PATIENT INFORMATION PREZISTA (pre-ZIS-ta) (darunavir) Oral Suspension PREZISTA (pre-ZIS-ta) (darunavir) Tablets Read this Patient Information before you start taking PREZISTA and each time you get a refill. There may be new information. This information does not take the place of talking to your healthcare provider about your medical condition or your treatment. Also read the Patient Information leaflet for NORVIR® (ritonavir). What is the most important information I should know about PREZISTA? • PREZISTA can interact with other medicines and cause serious side effects. It is important to know the medicines that should not be taken with PREZISTA. See the section “Who should not take PREZISTA?” • PREZISTA may cause liver problems. Some people taking PREZISTA in combination with NORVIR® (ritonavir) have developed liver problems which may be life-threatening. Your healthcare provider should do blood tests before and during your combination treatment with PREZISTA. If you have chronic hepatitis B or C infection, your healthcare provider should check your blood tests more often because you have an increased chance of developing liver problems. • Tell your healthcare provider if you have any of the below signs and symptoms of liver problems. • Dark (tea colored) urine • yellowing of your skin or whites of your eyes • pale colored stools (bowel movements) • nausea • vomiting • pain or tenderness on your right side below your ribs • loss of appetite PREZISTA may cause severe or life-threatening skin reactions or rash. Sometimes these skin reactions and skin rashes can become severe and require treatment in a hospital. You should call your healthcare provider immediately if you develop a rash. However, stop taking PREZISTA and ritonavir combination treatment and call your healthcare provider immediately if you develop any skin changes with symptoms below: • fever • tiredness • muscle or joint pain • blisters or skin lesions • mouth sores or ulcers • red or inflamed eyes, like “pink eye” (conjunctivitis) Rash occurred more often in patients taking PREZISTA and raltegravir together than with either drug separately, but was generally mild. See “What are the possible side effects of PREZISTA?” for more information about side effects. What is PREZISTA? PREZISTA is a prescription anti-HIV medicine used with ritonavir and other anti-HIV medicines to treat adults with human immunodeficiency virus (HIV-1) infection. PREZISTA is a type of anti-HIV medicine called a protease inhibitor. HIV is the virus that causes AIDS (Acquired Immune Deficiency Syndrome). When used with other HIV medicines, PREZISTA may help to reduce the amount of HIV in your blood (called “viral load”). PREZISTA may also help to increase the number of white blood cells called CD4 (T) cell 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). PREZISTA does not cure HIV infection or AIDS and you may continue to experience illnesses associated with HIV-1 infection, including opportunistic infections. You should remain under the care of a doctor when using PREZISTA. Avoid doing things that can spread HIV-1 infection. • 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.
• D o not have any kind of sex without protection. Always practice safe sex by using a latex or polyurethane condom to lower the chance of sexual contact with semen, vaginal secretions, or blood. Ask your healthcare provider if you have any questions on how to prevent passing HIV to other people. Who should not take PREZISTA? Do not take PREZISTA with any of the following medicines: • alfuzosin (Uroxatral®) • dihydroergotamine (D.H.E. 45®, Embolex®, Migranal®), ergonovine, ergotamine (Cafergot®, Ergomar®) methylergonovine • cisapride • pimozide (Orap®) • oral midazolam, triazolam (Halcion®) • the herbal supplement St. John’s Wort (Hypericum perforatum) • the cholesterol lowering medicines lovastatin (Mevacor®, Altoprev®, Advicor®) or simvastatin (Zocor®, Simcor®, Vytorin®) • rifampin (Rifadin®, Rifater®, Rifamate®, Rimactane®) • sildenafil (Revatio®) only when used for the treatment of pulmonary arterial hypertension. Serious problems can happen if you take any of these medicines with PREZISTA. What should I tell my doctor before I take PREZISTA? PREZISTA may not be right for you. Before taking PREZISTA, tell your healthcare provider if you: • have liver problems, including hepatitis B or hepatitis C • are allergic to sulfa medicines • have high blood sugar (diabetes) • have hemophilia • are pregnant or planning to become pregnant. It is not known if PREZISTA will harm your unborn baby. Pregnancy Registry: You and your healthcare provider will need to decide if taking PREZISTA is right for you. If you take PREZISTA while you are pregnant, talk to your healthcare provider about how you can be included in the Antiretroviral Pregnancy Registry. The purpose of the registry is follow the health of you and your baby. • are breastfeeding or plan to breastfeed. Do not breastfeed. We do not know if PREZISTA can be passed to your baby in your breast milk and whether it could harm your baby. Also, mothers with HIV-1 should not breastfeed because HIV-1 can be passed to the baby in the breast milk. Tell your healthcare provider about all the medicines you take including prescription and nonprescription medicines, vitamins, and herbal supplements. Using PREZISTA and certain other medicines may affect each other causing serious side effects. PREZISTA may affect the way other medicines work and other medicines may affect how PREZISTA works. Especially tell your healthcare provider if you take: • medicine to treat HIV • estrogen-based contraceptives (birth control). PREZISTA might reduce the effectiveness of estrogen-based contraceptives. You must take additional precautions for birth control such as a condom. • medicine for your heart such as bepridil, lidocaine (Xylocaine Viscous®), quinidine (Nuedexta®), amiodarone (Pacerone®, Cardarone®), digoxin (Lanoxin ®), flecainide (Tambocor ®), propafenone (Rythmol®) • warfarin (Coumadin®, Jantoven®) • medicine for seizures such as carbamazepine (Carbatrol®, Equetro®, Tegretol®, Epitol®), phenobarbital, phenytoin (Dilantin®, Phenytek®) • medicine for depression such as trazadone and desipramine (Norpramin®) • clarithromycin (Prevpac®, Biaxin®) • medicine for fungal infections such as ketoconazole (Nizoral®), itraconazole (Sporanox®, Onmel®), voriconazole (VFend®) • colchicine (Colcrys®, Col-Probenecid®) • rifabutin (Mycobutin®) • medicine used to treat blood pressure, a heart attack, heart failure, or to lower pressure in the eye such as metoprolol (Lopressor®, Toprol-XL®), timolol (Cosopt®, Betimol®, Timoptic®, Isatolol®, Combigan®) • midazolam administered by injection • medicine for heart disease such as felodipine (Plendil®), nifedipine (Procardia®, Adalat CC®, Afeditab CR®), nicardipine (Cardene®)
IMPORTANT PATIENT INFORMATION • s teroids such as dexamethasone, fluticasone (Advair Diskus®, Veramyst®, Flovent®, Flonase®) • bosentan (Tracleer®) • m edicine to treat chronic hepatitis C such as boceprevir (VictrelisTM), telaprevir (IncivekTM) • medicine for cholesterol such as pravastatin (Pravachol®), atorvastatin (Lipitor®), rosuvastatin (Crestor®) • medicine to prevent organ transplant failure such as cyclosporine (Gengraf®, Sandimmune®, Neoral®), tacrolimus (Prograf®), sirolimus (Rapamune®) • salmeterol (Advair®, Serevent®) • medicine for narcotic withdrawal such as methadone (Methadose®, Dolophine Hydrochloride), buprenorphine (Butrans®, Buprenex®, Subutex®), buprenorphine/naloxone (Suboxone®) • medicine to treat schizophrenia such as risperidone (Risperdal®), thioridazine • medicine to treat erectile dysfunction or pulmonary hypertension such as sildenafil (Viagra®, Revatio®), vardenafil (Levitra®, Staxyn®), tadalafil (Cialis®, Adcirca®) • medicine to treat anxiety, depression or panic disorder such as sertraline (Zoloft®), paroxetine (Paxil®) This is not a complete list of medicines that you should tell your healthcare provider that you are taking. Ask your healthcare provider or pharmacist if you are not sure if your medicine is one that is listed above. Know the medicines you take. Keep a list of them to show your doctor or pharmacist when you get a new medicine. Do not start any new medicines while you are taking PREZISTA without first talking with your healthcare provider. How should I take PREZISTA? • Take PREZISTA every day exactly as prescribed by your healthcare provider. • You must take ritonavir (NORVIR®) at the same time as PREZISTA. • Do not change your dose of PREZISTA or stop treatment without talking to your healthcare provider first. • Take PREZISTA and ritonavir (NORVIR®) with food. • Swallow PREZISTA tablets whole with a drink. If you have difficulty swallowing PREZISTA tablets, PREZISTA oral suspension is also available. Your health care provider will help determine whether PREZISTA tablets or oral suspension is right for you. • PREZISTA oral suspension should be given with the supplied oral dosing syringe. Shake the suspension well before each usage. • If you take too much PREZISTA, call your healthcare provider or go to the nearest hospital emergency room right away. What should I do if I miss a dose? People who take PREZISTA one time a day: • If you miss a dose of PREZISTA by less than 12 hours, take your missed dose of PREZISTA right away. Then take your next dose of PREZISTA at your regularly scheduled time. • If you miss a dose of PREZISTA by more than 12 hours, wait and then take the next dose of PREZISTA at your regularly scheduled time. People who take PREZISTA two times a day • If you miss a dose of PREZISTA by less than 6 hours, take your missed dose of PREZISTA right away. Then take your next dose of PREZISTA at your regularly scheduled time. • If you miss a dose of PREZISTA by more than 6 hours, wait and then take the next dose of PREZISTA at your regularly scheduled time. If a dose of PREZISTA is skipped, do not double the next dose. Do not take more or less than your prescribed dose of PREZISTA at any one time. What are the possible side effects of PREZISTA? PREZISTA can cause side effects including: • See “What is the most important information I should know about PREZISTA?” • Diabetes and high blood sugar (hyperglycemia). Some people who take protease inhibitors including PREZISTA can get high blood sugar, develop diabetes, or your diabetes can get worse. Tell your healthcare provider if you notice an increase in thirst or urinate often while taking PREZISTA. • Changes in body fat. These changes can happen in people who take antiretroviral therapy. The changes may include an increased amount of fat in the upper back and neck (“buffalo hump”), breast, and around the back, chest, and stomach area. Loss of fat from the legs, arms, and face may also happen. The exact cause and longterm health effects 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. Call your healthcare provider right away if you start having new symptoms after starting your HIV medicine. • Increased bleeding for hemophiliacs. Some people with hemophilia have increased bleeding with protease inhibitors including PREZISTA. The most common side effects of PREZISTA include: • diarrhea • headache • nausea • abdominal pain • rash • vomiting Tell your healthcare provider if you have any side effect that bothers you or that does not go away. These are not all of the possible side effects of PREZISTA. For more information, ask your health care provider. Call your doctor for medical advice about side effects. You may report side effects to the FDA at 1-800-FDA-1088. How should I store PREZISTA? • Store PREZISTA oral suspension and tablets at room temperature [77°F (25°C)]. • Do not refrigerate or freeze PREZISTA oral suspension. • Keep PREZISTA away from high heat. • PREZISTA oral suspension should be stored in the original container. Keep PREZISTA and all medicines out of the reach of children. General information about PREZISTA Medicines are sometimes prescribed for purposes other than those listed in a Patient Information leaflet. Do not use PREZISTA for a condition for which it was not prescribed. Do not give PREZISTA to other people even if they have the same condition you have. It may harm them. This leaflet summarizes the most important information about PREZISTA. If you would like more information, talk to your healthcare provider. You can ask your healthcare provider or pharmacist for information about PREZISTA that is written for health professionals. For more information, call 1-800-526-7736. What are the ingredients in PREZISTA? Active ingredient: darunavir Inactive ingredients: PREZISTA Oral Suspension: hydroxypropyl cellulose, microcrystalline cellulose, sodium carboxymethylcellulose, methylparaben sodium, citric acid monohydrate, sucralose, masking flavor, strawberry cream flavor, hydrochloric acid (for pH adjustment), purified water. PREZISTA 75 mg and 150 mg Tablets: colloidal silicon dioxide, crospovidone, magnesium stearate, microcrystalline cellulose. The film coating contains: OPADRY® White (polyethylene glycol 3350, polyvinyl alcohol-partially hydrolyzed, talc, titanium dioxide). PREZISTA 400 mg and 600 mg Tablets: colloidal silicon dioxide, crospovidone, magnesium stearate, microcrystalline cellulose. The film coating contains: OPADRY® Orange (FD&C Yellow No. 6, polyethylene glycol 3350, polyvinyl alcohol-partially hydrolyzed, talc, titanium dioxide). This Patient Information has been approved by the U.S Food and Drug Administration. Manufactured by: PREZISTA Oral Suspension Janssen Pharmaceutica, N.V. Beerse, Belgium PREZISTA Tablets Janssen Ortho LLC, Gurabo, PR 00778 Manufactured for: Janssen Therapeutics, Division of Janssen Products, LP, Titusville NJ 08560 NORVIR® is a registered trademark of its respective owner. PREZISTA® is a registered trademark of Janssen Pharmaceuticals © Janssen Pharmaceuticals, Inc. 2006 Revised: May 2012
around the globe
Life’s A Ball The Life Ball, Europe’s largest (and possibly the world’s most extravagant) annual HIV/AIDS fund-raising party, was dedicated to the element of fire for its 20th anniversary bash. Organized by the AIDS Life Association, Life Ball has raised more than $22 million during the past 19 years for HIV/AIDS projects worldwide through partnerships with amfAR, the William J. Clinton Foundation, the Elton John AIDS Foundation, and UNAIDS. This year the event raised a record amount: approximately $2.6 million. Under the slogan “Fight the Flames of Ignorance,” the party on May 19, in front of and inside Vienna’s City Hall, drew an estimated 40,000 attendees, including fashion, film, and music icons.
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ď ° Magic in Magenta (top) The Gothic, historic Rathaus, the seat of government for both
Vienna and the surrounding state, opened up for guests with concerts, dancing, and performances that last until the wee hours of the morning.
Swinging Sisters Musical performers during the opening included Resident Evil star Milla
DIPTENDU DUT TA/AFP/Gett y Images
Jovovich, Scissor Sisters (above), Baptiste Giabiconi, Jon Secada, David Helfgott, Ensemble Wien Klang, and others.
ď ´ Dancer From the Dance (opposite) During the opening two-hour processional extravaganza, glittered and body-painted dancers thrilled crowds in the City Hall Square as well as Austrian audiences at home watching the event on television.
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Arrivals (top) The magenta carpet was flooded with thousands of revelers in fire-themed garb, while
an estimated 40,000 residents and visitors enjoyed the spectacle.
Fire With Fire (above) Costumed ticket holders were aptly described by supermodel Paulina Porizkova as
“truly spectacular, like a tropical hothouse of the wildest, brightest carnivorous plants.”
Cool as a Cucumber (opposite) amFar ambassador and model-actress-musician Milla Jovovich tickled
the crowd when she said Vienna was one of her favorite cities. She later debuted her new song, “Electric Sky,” during the fashion show.
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Previous Spread (clock wise from left): courtesy life ball (3), Robert Tober, Christoph Leder, Katharina Schiffl; this spread (clock wise from top left): courtesy lifeball (3), Nadine Poncioni, Robert Tober (2)
STATUS SYMBOLS around the globe
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STATUS SYMBOLS around the globe
this page: courtesy lifeb all/Alexander Wulz; opposite page (clock wise from top left): Laurent Ziegler, Robert Tober, Laurent Ziegler, Bernhard Fritsch
Driving Beat Broadway and 30 Rock star Cheyenne Jackson kicked off the evening’s revelry (and melted a few hearts) with the premiere live performance of his single “Drive.”
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Like a Pro (top left) The ultimate diva, supermodel Naomi Campbell, worked the runway in the first of two gorgeous gowns before speaking to the crowd. Charmed (top right) A dancer on
the catwalk.
Top Brass (middle) Former President Bill
Clinton addressed Life Ball founder Gery Keszler (second from right) and the audience, saying, “This organization was the first organization in Europe, beginning in 1992, that was seriously, systematically, from the beginning committed to combating the AIDS epidemic and saving people’s lives.… I’m honored to be associated with them and really grateful that they support us.” Much of the funds raised remain in Austria, but over $860,000 will go to support the Clinton Health Access Initiative, aimed at reducing the number of new HIV infections among babies in Uganda and Zambia. Phoenix Rising The fire theme lit up the
catwalk during the fashion show.
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OFFICER &A GENTLE Sons of Anarchy star Rockmond Dunbar sets a new standard for celebrity HIV activism By Diane Anderson-Minshall
When he burst onto the small screen in 1994, on TV’s sci-fi semiclassic Earth 2, Rockmond Dunbar was just a wide-eyed, fresh-faced kid from Northern California who was happy to be working in Hollywood. Dunbar was a rather green 21-year-old who shared the screen with other young notables (Rebecca Gayheart and Antonio Sabato Jr., to name two), but he caught the attention of fans—and Tinseltown insiders—right from the start. Today, fans know the 39-year-old Dunbar best for his iconic characters from acclaimed series—Kenny Chadway on Soul Food, C-Note Franklin on Prison Break, Pookie on The Game,
“I was punished for that role [in Punks]. I still believe you do a role because it will change someone’s life. Regardless of the stones that are thrown, I did it with no regrets. I am an artist.” Jalen on Girlfriends, Detective Mark Gustafson on Terriers, and his latest turn, as Lt. Eli Roosevelt of the sheriff’s department, the rare “good” guy on FX’s outlaw biker drama, Sons of Anarchy. With fame came an increasing presence as an activist, for gay rights (after appearing in the gay-themed film Punks and on gay TV series Noah’s Arc), AfricanAmerican visibility in Hollywood, and HIV awareness. For years he’s been one of the few celebrities who has used his fame to push for more HIV testing among black men—with the Black AIDS Institute’s Greater Than AIDS campaign—and he’s taken on roles that show that people with HIV are not stock characters. He played a closeted married man with HIV on Private Practice and the conflicted brother of an HIV-positive man (played by Hill Harper) on Soul Food. Dunbar, who was named one of Television’s 50 Sexiest Stars of All Time by TV Guide, took a few moments on the set of Sons of Anarchy (which returns for its fifth season September 11) to talk about his iconic roles, what it will take to stop HIV, and how a DNA test changed his life. Your Sons of Anarchy character, Sheriff Eli, upends TV tradition. Too often when we have black men on-screen, they’re the criminals, not the cops. How do you see the character of Eli?
Not only a groundbreaking role in general, but he is another representation of a positive African-American male character in a stable, powerful, and impactful job. Sheriff Eli is acknowledged as being the greatest nemesis for the lead characters to date on the show. There’s a scene on Sons where Jax, who the show centers around, is reading his dad’s journals about his motorcycle club. One line is “A true outlaw finds the balance between the passion in his heart and the reason in his mind. The outcome is the balance of might
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and right.” Do you think Eli has found the balance between the passion in his heart and the reason in his mind?
Yes, he has. In the last episode, when Eli gives Juice [the bikers’ intelligence officer] back his case file he tells him, “You are a criminal, you do bad shit. I’m a police officer, I try to stop you.” This to me clearly demonstrates that Eli knows who he is and what he is really willing to do to bring righteousness and justice to his part of the world. Finding, knowing, and living that balance. What about the Rockmond in real life? Have you found the balance between the passion in his heart and the reason? No. It’s been said that Sons of Anarchy is based loosely around Hamlet. If so, where does Eli come in?
Hamlet: Part II. You’ve starred in some really interesting crime dramas: Terriers, Prison Break, Sons of Anarchy. Why are you drawn to those roles? Not drawn to
them, but their spirit and energy are drawn to me. The roles sought me out. I enjoy each of the characters I have played in these series because they are well written and the characters live off the screen.
One of your more notable roles, Kenny on Soul Food, was another rarity on TV: a stable black businessman with a family. There was a lot of talk when you didn’t get the NAACP award for the role. What did you think about that? Everyone has voiced his or her opin-
ion. It is not for the accolades or check that I work. It is for the chance to do great work. Accolades may come in the future, but everything comes in its time.
A lot of fans were pleased to see a show about African-American lives that didn’t have violence. It was a great
Dunbar plays Lt. Eli Roosevelt, the rare good guy on FX’s biker drama, Sons of Anarchy.
show that was one of the longest-running African-American dramas featured on television. It was historic and needed. I wish it were still on. One of the storylines on Soul Food revolved around your character’s brother, Kelvin, played by Hill Harper, coming out as HIV-positive. It was a struggle for both men. Do you think either of the characters was emblematic of how black men feel about HIV?
It was a story that reflected real life. One of the millions of stories that can be portrayed. Sometimes it seems like TV is still quite segregated. Shows with largely black casts, like Girlfriends, Soul Food, The Game, Moesha—well, white people, by and large, don’t watch those shows. Why do you think that is? People
watch what they relate to. The networks
that unicorns do exist,” which is a lovely statement. Do you think growing up in the San Francisco area helped you be more accepting? Growing up in
the Bay Area gave me exposure that helped me be proud of where I am from, of who I was, and who I am today. It was a great melting pot of ideas and cultures. You’ve joined other actors in promoting HIV testing in black communities. What’s the biggest misconception that prevents folks from getting tested?
You can’t get results right away. Wrong. There is a cure for AIDS, so why get tested? Wrong. You can get tested, and in 15 minutes you’ll know the answer. A rapid test helps one know so that you can act immediately. And cost is not a determinant— testing centers all around the country offer free testing. Knowledge is power. The HIV rate for black men is still soaring. What do you think will stop that? Education. You played a closeted gay man with HIV on Private Practice. That was a really interesting arc. Did you empathize with the character? Yes, because
being who you are and living freely is the most important thing we can do as people. His wife knew that he was sad because he was living a lie, and all she wanted for him was to embrace the truth—be who he was and she would still love him. are marketing to the masses and look to make money off their programming choices. Again, everything has its season. UPN’s Girlfriends was a hundred times better than, say, Whitney, which gets decent ratings on NBC. What’s the difference? My friends created Girlfriends,
and it was a positive reflection of their lives. Political agendas play into what is shown these days, and we need to understand how this figures in the choices being made on what to broadcast.
COURTESY FX NE T WORKS
You had a really well-received role in the indie film Punks, a film about black gay men. What was the reaction to it? I was punished for taking that role.
Equally applauded and parodied.
Did that change how you felt about the role? I still believe you do a role because
it will change someone’s life. Regardless of
the stones that are thrown, I did it with no regrets. I am an artist. At the time, you told The Advocate that other actors wouldn’t take the role because of the kissing scene with another man. That was a decade ago. Is that fear still there among actors?
Yes, the fear never goes away when your concern is how you will be perceived in the industry. What kind of support have you gotten from the gay community? Tons of sup-
port. The most inspirational support was from E. Lynn Harris, a great writer and human being. I was invited to his house for dinner, and not only did he welcome me, but he was overt in his support and celebration of me as a heterosexual actor and the work I had done on-screen.
You also said that “we need to show
One of the charities you work with is the Black AIDS Institute. Why that organization in particular? The Black
AIDS Institute is headed by Phill Wilson. Here is a man who not only talks the talk but also walks the walk. He’s a survivor for over 20 years with HIV. He knows what it means to be tested and receive that call. He also knows that hope can be found and full, productive lives created with the support of organizations like the Black AIDS Institute and the community at large. As they say, we are Greater Than AIDS.
You have a production company, Flypaper Entertainment, with Carol Ann Shine, who you worked with on Punks. Does that give you some freedom to create stories that aren’t out there?
Yes. Carol and I are as different as night and day but alike in that we take our differences and create stories that reach out to all types of people. Stories with impact september /october 2012
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and meaning that show reflections of faces and lives on the silver screen we don’t usually see. We look beyond the apparent to the hidden, the surprising, and the story that you might pass in the blink of an eye and miss a lifetime of wonder. Different types of heroes who more broadly reflect those around us of every hue and belief.
Dunbar as Detective Mark Gustafson on Terriers; C-Note Franklin on Prison Break; and a closeted married man with HIV on Private Practice
You’re a diplomatic goodwill ambassador from Gambia, the smallest country in Africa. His Excel-
lency President Yahya Abdul-Azziz Jemus Junkung Jammeh invited me to Gambia for an official state visit. The purpose was to build a bridge of art and communication between the people of Africa and African-Americans, to develop communication via storytelling that creates a commonality of language and emotion so that we change perceptions, break down stereotypes, and create new opportunities. This action may take time, but all involved are dedicated to making it happen. You did a DNA test a few years ago. What did you learn? My DNA test was from my mother’s chromo-
somes. I utilized AfricanAncestry.com to run my test. I discovered I was from the Yoruba tribe in Nigeria. My new name, given during a ceremony in September 2011 in New York City at a gathering of the Nigerian tribes, is Omobowale (“the child returns home”) Adunbarin (“a man of the people”). I learned more about my heritage and ancestry and have shared that amazing experience with my family and my fans. Recently I took another trip with my mother, my girlfriend actress Maya Gilbert, and her mother to Nigeria and the Ivory Coast. This was a first-time trip for our mothers, and it was an experience that left us all speechless with wonder. We were able to celebrate the current talent in Nigeria as I awarded the best director prize and Maya the best leading actress award at the Africa International Film Festival.
legacy, the accomplishments of our forefathers, and the accomplishments of our living relatives in Africa. [It offers] a richness of life that expands one’s heart and mind beyond the borders of the United States.
You probably did a lot of odd jobs to support yourself before your acting career really took off. What was the worst one? Everyone has that one job
that teaches us how to dream, appreciate, and to never look back but keep on getting up when reaching for the dreams leaves us beaten. For me that job was the grocery store night stocker clerk, aisle 25, dog food. Dog food cans explode in the heat. There was a lot of work each night. Second job was a cow lot where I would shovel shit for compost all day in the heat and sun. Both jobs taught me humility, patience, and commitment. I had made a goal at the start of that summer and I did it. I bought a car and have been driving toward the future ever since. ✜ 24
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from top: courtesy fx ne tworks; courtesy fox television; courtesy abc television
Why was it important to find out about your heritage? Everyone should know about their past, their
A MESSAGE FROM YOUR IMMUNE SYSTEM
Starting treatment early may help you live a longer, healthier life. Treatment guidelines issued by the US Department of Health and Human Services (DHHS) recommend starting HIV medicines for all people with HIV, regardless of their CD4 count. Talk with your healthcare provider about your treatment options and all the factors you need to consider before starting HIV medicines. For more information, call toll-free 1-888-451-5723 or visit Š 2012 Gilead Sciences, Inc. All rights reserved. UN13262 06/12
TREATHIVNOW.COM.
t “a gay s ju s a f o t h nger thoug e, in America at least, o l o n is V I H ake sure d bisexual men wer ecades while m o t t h g fi s t d an While activis easy to forget that gay e who have survived for ntion, and a cure. disease,” it’s ntract HIV. Many of thos ht for awareness, preve e been positive g o the first to c become leaders in the fi rs—all gay men who hav est of us. r e e positive hav with four long-term HIV credible things for the in p We caught u ecades—who are doing d f or o v e r t w o SON-MIN R E D N A E N BY DIA
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SH A L L
Nelson Vergel
Founding director of Program for Wellness Restoration in Houston When did you first find out you were HIV-positive? In 1986. I most probably got
infected in 1981, since I had all the symptoms of infection then.
At the time, did you think you’d be able to live the life you’ve lived with HIV? Not
at all. Everyone was dying around me and I felt like I was in a war zone. I was waiting for the next bomb to fall on me.
What has been the biggest surprise about having HIV? That not only I can live
healthy but I can be 100% out about my status with the work I do in the community. HIV gave me purpose to help others. Do you worry about getting older with HIV? Yes. In a way, I never got mentally
prepared to get older, since I thought I was going to die before I was 30. At 53, I feel and look relatively OK for having had HIV for 27 years and been exposed to the nasty older HIV drugs. But I worry about heart disease, fatigue, cognitive loss, and not living fully in the present. When I was told I was poz, my goal was to remain healthy so that I did not have to depend on anyone—I was a recent immigrant and alone in the U.S. I have the same goal as I get older.
So many gay and bi men died of AIDS complications in the ’80s and ’90s. How did that impact you? I helped around 24 of
my friends and three lovers die. After a while I stopped grieving and became very “transactional” when someone died. I was the one who took care of funeral details while everyone else seemed to be falling apart. I guess I wouldn’t let myself grieve to protect myself from becoming depressed and sick. What don’t people realize about HIV?
After 31 years, people forget that HIV still kills and that it has complications. They forget that HIV-positive people face stigma and have a hard time dating and finding partners that do not freak out about HIV. Describe your work. I am the founding
director of Program for Wellness Restoration, a 17-year-old nonprofit in Houston that educates HIV-positive people about best ways
to stay healthy. I am also a treatment activist in the areas of salvage therapy and cure research. I am a lecturer, an expert at TheBody.com, and author of books. My friends joke that I all I do is “talk shop” about HIV. I think HIV gives us an opportunity to face our fears of death and sickness, and many of us have been able to reinvent ourselves after this terrible diagnosis. I remind newly diagnosed people that HIV is not the end of the world, but it is also no picnic. Staying educated is key to growing strong with HIV. To read up on the Program for Wellness Restoration, go to PowerUSA.org.
1987
Nelson (left) and his partner, Calvin, in 1987, the year after Nelson was diagnosed as HIVpositive. Calvin died six years later of an AIDS-related illness.
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James Vellequette
Associate director of the Condom Nation Tour in Los Angeles When did you first find out you were HIV-positive? November 27, 1990, at the
Red Lion Hotel in Orange County, Calif. I was infected on October 3 by a guy I was seeing at the time, and I experienced a dramatic seroconversion that started on October 16. My doctor, who had tested me negative in August, tested me again in mid November and told me that I was just barely positive. Apparently there were just a few p24 and other key proteins showing up on the test panel, but enough to agree with my recent illness for him to deduce that I had recently contracted HIV. As I had been through such a rough time, he invited me over to his house for Thanksgiving dinner and some events at the beach over the weekend in Newport Beach, and then told me on the Monday after Thanksgiving at the conclusion of a community event dinner held at the Red Lion Hotel. I will never forget the name of that hotel. Not even sure it still exists, but I know where I was sitting at that moment and the look on his face when he told me. I was stunned.
At the time, did you think you’d be able to live the life you’ve lived with HIV?
Well, I don’t know if I had a real “life plan” that I had to give up, since I was only 24 and floundering a little in determining my life goals, but with regard to my overall longevity, it was not looking good and I fully expected to be dead by 1998 at the latest. You say you’d make a lousy gay stereotype—but there’s a real issue behind that. Yes, I can’t dance, sing, or put together
Do you have a partner or spouse? Are they HIV-positive? I have been seeing a guy
for a year who is also HIV-positive. My two
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previous partners—both about five years— were negative. I have been in mostly serodiscordant relationships over the last 22 years. What has been the biggest surprise about having HIV? That I am still here. Not
all HIV is the same. Sometimes you get a little cold or a big bad cold, and my virus seems to be a sturdy one. I got my AIDS diagnosis in only three years from infection, and things were not looking very good and thus I had to go on disability from McDonnell Douglas Aircraft in Long Beach, Calif., where I was the
scheduler in charge of coordinating subassemblies from our international partners. As we get older we care less about what people think about us. I hit that phase earlier than a lot of people do because I live with a quiet ticking noise in the back of my head, thinking that I am always running out of time. Do you worry about getting older with HIV? I fully expect to die at any time some
days, and I do not mean that with any sense of drama. The medications that keep me alive are also toxic, and we know that in my gut,
Azul DelGrasso
colors or an outfit, so I’ve often felt like I never fit in with the core of the community that gets all the attention. Also, I am gay and fully accepting of who I am without shame or question, but gay rights has never been an issue that I have been involved in. Once I started doing HIV advocacy work, I decided that I needed to focus on one or the other, but I could not do both or my split focus would undermine the quality of my effort. I figured that there were enough HIV-negative people to carry the gay rights banner.
1994 James, who was an openly positive model, posing in Los Angeles four years after he tested HIV-positive
was—the long-term effects of the drugs and the virus. That is who is dying of AIDS today in the U.S. So many gay and bi men died of AIDS complications in the ’80s and ’90s. How did that impact you? I found out I was
where the virus lives and thrives, that my cell structure is aging at a rate quicker than someone who is negative. I am fine with all of this—it is a fact of medical science, so I simply appreciate all of the extra time that I have had and value every year I can tick off as another blessing. At some point in the last 20 years, my friends stopped dying of specific HIV-related issues and more of them just started dying in their late 40s and early 50s of heart complications and other non-HIV diseases. For those of us in the battle long-term, we knew what it
positive in 1990. There was no one there to “show me the way” as a 24-year-old living in Los Angeles with the virus, which was stunning eight years after [AIDS was discovered], so I started a support group in 1994 through Being Alive L.A. and the L.A. Gay and Lesbian Center called Positive 20s. Over the course of the seven years that I ran the group, and along with all of the people that I had met doing my advocacy work and doing lots of public speaking about living with HIV, I wrote down the names of 106 friends on my “goodbye” list—and then I just stopped counting, but that did not stop the dying. I just could not write down any more names. To this day I cannot visit that Names Project AIDS Memorial Quilt even though I was less than 100 yards from it at the National Mall this summer. I consider that time, from 1990 to 1996,
as my own personal Vietnam, where I just experienced so much loss that I grew numb in order to function. With the arrival of protease inhibitors in 1996, I went on a tough combination, but it turned my numbers around and I went back to school to get my bachelor’s degree from Santa Monica College and the University of California, Los Angeles. What don’t people realize about HIV?
That it is a real part of their lives. That it is easier to get if you are not on your game and thinking smart all the time about where you are putting things into your body, whether it is sexual or drug-related. People think that someone with HIV is going to have a sign on them that warns them so that when that time comes, they will play extra safe with them. Lots of pretty people with stunning bodies have HIV. More than 20% of the people with HIV do not even know that they have the virus, so how can those people protect you if they do not even know themselves? Read more about James’s life at Condom-Nation.tumblr.com.
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ROBERT KATZ
Board member emeritus of Positive Pedalers and training ride leader for the annual AIDS Life/Cycle bike ride in San Francisco
When did you first find out you were HIV-positive? I found out 27 years ago, in 1985. I’d been hospitalized for an unrelated medical condition and my doctor felt that the test results would be helpful in determining the course of treatment. From 1978 to 1984, I had been a participant in the New York branch of the hepatitis B vaccine trial. Thanks to that participation I was able to find out, a couple of years after receiving my test results, that I’d been positive since no later than the spring of 1981. I subsequently have surmised that I was probably infected in December 1980.
Do you have a partner? We’ve been together for over 10 years. He is HIV-negative. I would never intentionally do anything that might risk exposing him to HIV.
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What has been the biggest surprise about having HIV? There are so many surprises. Based on what I knew at the time I tested positive, the biggest surprise of all is that I’m still around. Another surprise is that, for the most part, I’d be able to live without having to take my status into account. The change in the course of the epidemic occasioned by the development of effective medications to combat HIV
was certainly a huge surprise. This is not to say that I take things for granted. Each time I take my medications is a reminder of my status; each time I have to pay for those medications is yet another reminder. Despite having very good health insurance, the medications are not cheap. Do you worry about getting older with HIV? I have a certain amount of
stevo rood
At the time, did you think you’d be able to live the life you’ve lived with HIV? I have to admit to harboring two simultaneous and conflicting sets of thoughts. On the one hand, I assumed I’d get an AIDS diagnosis sooner or later. At the time I was tested my doctor repeated the official line on the subject, which was that perhaps 15% of those infected with HIV would develop AIDS. Everything I’d read about the virus up to then convinced me that, in the absence of an effective means of intervention, that figure was definitely incorrect. In 1985 there were no antiretrovirals and therefore no reason at all to think I wouldn’t someday progress to AIDS, despite what my doctor was telling me. After a certain amount of denial about my own health, as my friends began dying, I began to experience a great deal of fear about my own health. Simultaneously with that, my health continued to be good. I had no means of reconciling both of these thought processes, so I tended to veer back and forth between one and the other. The presumption that I could be struck terminally ill at any time undoubtedly affected at least some of the choices I made. At no time did I seriously consider the possibility that I’d still be alive and well more than two decades later.
1985 Robert on a trip to Boston in the spring of 1985, unknowingly carrying HIV, which was detected a few months later. He’s been able to trace his date of infection to around December 1980.
my few remaining indulgences are pretty minor. I have been clean and sober for a very long time and plan to stay that way. While certainly no guarantee, I presume that avoiding alcohol and recreational drugs is certainly desirable in and of itself. I try to stay physically active. I recently completed my 13th AIDS charity bike ride. I certainly hope my relationship endures. I don’t know what it would be like to be elderly, single, and living with HIV. That would definitely be a challenge.
ambivalence. Since the medications I take appear to be working, I suppose I operate mainly on the assumption that I will live as long as I might have otherwise. At the same time, there are undoubtedly indications that long-term infection, combined with the long-term effects of medication, could alter things suddenly in ways that are difficult to anticipate and difficult to avoid. I try to live as healthy a life as I possibly can;
So many gay and bi men died of AIDS complications in the ’80s and ’90s. How did that impact you? I lost many, many friends to HIV, most of them after I tested positive. The partner I was with from 1986 to 1992 passed away. My previous partner died not long afterward. I was hit particularly hard between 1990 and 1994, and I found the experience to be emotionally devastating. I went through two different rounds of grief counseling in addition to undergoing several years of psychotherapy. I found it very difficult to
date during that time and was rather pessimistic about finding another relationship. I definitely experienced—and continue to experience—a certain amount of survivor guilt. In particular, I strongly presume that I was the one who infected the partner I was with on and off from 1980 to 1986 even though I am constantly reminded that by the time we knew HIV existed it was already too late to have done anything about it. What don’t people realize about HIV? None of the treatments are perfect and there is no cure. Far too many people presume that nobody dies of AIDS anymore, at least not in First World nations. This, of course, is not true. There are, of course, certain elements in the world that insist on continuing to think of HIV as a “gay” disease, despite the fact that the overwhelming majority of those living with HIV in the world today are heterosexual. Visit PosPeds.org for information on Positive Pedalers and AIDSLifeCycle.org to sponsor Katz or get details on the ride.
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Michael Smithwick
Executive director of Maitri Compassionate Care in San Francisco
When did you first find out you were HIV-positive? In 1979, while living in Greenwich Village in New York City, my lymph glands became suddenly enlarged and I started to experience periodic drenching night sweats. But aside from those relatively benign symptoms, it wasn’t until the HIV test became available in 1985 that I was officially diagnosed as positive. At the time, did you think you’d be able to live the life you’ve lived with HIV? Well, in the mid ’80s an HIV-positive diagnosis was no big deal. We were all told not to be worried, that it simply meant that we had been “exposed” to the virus, not that we would necessarily become ill. It wasn’t until later—after the passage of time and many more deaths—that it was determined that most positives would eventually develop AIDS if the virus were left untreated. At that point, I certainly didn’t think I’d live a full life. In fact, I recall praying that I’d live long enough to see my infant goddaughter walk and talk. She’s now 23. Do you have a partner? I do have a partner, who is also HIV-positive. We’ve been together going on 20 years. What has been the biggest surprise about having HIV? That, aside from the health concerns, there are some hidden blessings. Knowing my HIV status and realizing that there were no guarantees about my long-term health allowed me to be much more open about my life with others. I told all my family, friends, and even casual acquaintances of my HIV status back in the ’80s. Being so open allowed me to rise above the stigma and shame that seemed to be pervasive at the time. It liberated me, actually, and allowed me to appreciate each and every day of life much more fully than I would have otherwise. Life is such a gift that too many people take for granted. Do you worry about getting older with HIV? I don’t. Having just turned 56, I realize that people with long-term HIV are at higher risk for cancers and organ dysfunction at a younger age than the general popu-
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1982 Michael chats on the phone at home in New York City, three years after he was infected with HIV. It wasn’t until three years later that he received his positive test result. Smithwick is featured prominently in the new book Undisclosed: Secrets of the AIDS Epidemic From Some Unlikely Survivors. Read our interview with the author at HIVPlusMag.com.
lation. But worry is such a negative emotion, both mentally and physically. I prefer to do all that I can to improve my chances for continued good health and then focus my energies on the present rather than fearing the future. When I do consider the future, it is with optimism and curiosity. So many gay and bi men died of AIDS complications in the ’80s and ’90s. How did that impact you? I lived through the ’80s and ’90s in San Francisco’s Castro District. So yes, I saw many friends, neighbors, and acquaintances sicken and die. It all happened so quickly and there seemed to be no end in sight. My own HIV-positive status really didn’t alter the experience of observ-
ing the epidemic take its horrible toll. Like others, I got angry at the lack of government action and tried to help in any way I could and grieved for the many precious lives lost way too early. What don’t people realize about HIV? That it is not over! Too many people now think of HIV as an unfortunate condition that simply requires popping a few antiviral pills each morning. We must continue to push for a vaccine for those who are not yet infected and a cure for those who are. Until then, let’s not pretend that AIDS is “fixed.” Find out about the Maitri Compassionate Care in San Francisco at MaitriSF.org.
Anita Bowen Photography
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One lesbian tells her story of surviving assault, drug abuse, and HIV to inspire others By Michelle Garcia
t
he oscar-nominated 2009 film Precious was bleak. The protagonist, in addition to being a poorly educated teen mother, was a victim of sexual abuse, impoverished, and infected with HIV in the early 1990s, a time when the virus was still often a death sentence. Life could have been very similar for Merle “Conscious” Soden, but equal parts determination and intelligence wouldn’t allow it. In fact, she takes issue with Precious for that very reason. “[My life] is not like the end of Precious, where she’s HIV-positive, she’s walking up the hill in Harlem, she’s still down-and-out, and she’s still uneducated,” Soden says. “That’s not the reality of people who are HIV-positive. And this is my message. You can be like me. You don’t have to be uneducated. You don’t have to be trash-talking. You don’t have to be drug-selling and in the street. You can be a productive member of society.”
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Soden tells the riveting, tumultuous story of her life in her one-woman show, Getting Unstuck: Homeless to Hollywood. Soden decided to present her life in her own words, from the crib through drug addiction, HIV infection, sobriety, and then her college graduation just last year. At age 5 in New York City’s Harlem neighborhood, years before Soden donned a cap and gown, she took her first sip of whiskey. Two years later she took her first hit of cocaine. She says her father was a cop, but her mother was a robber—and this led to a childhood of difficulties. “She got arrested, and their relationship went south really early on. I was left to live with my mom, and I saw the grimier side of life,” Soden says. Fortunately, Soden was academically gifted and athletically talented. Despite having a mother who would leave her for days or weeks on end to go on drug benders, and despite jumping from foster home to foster home throughout her adolescence, Soden excelled in school, ultimately receiving a full athletic scholarship to Syracuse University. She eventually left to attend the New York Institute of Technology back home. In her spare time, she played basketball at the West 4th Street Courts, known for a high caliber of street ball. “That’s where I met Queen Latifah,” Soden recalls. “At that time her name was Dana Owens. We played basketball together, and we’d hang out in the clubs together, and we had a ball.” One day Latifah said she wasn’t going to be available to play with the team anymore. She wanted to be a rapper. “I asked her, ‘What do you mean you’re going to be a rapper? There are no female rappers,’ ” Soden says. “The next time I saw her, literally, she was Queen Latifah.” After Queen Latifah’s big break in 1989, Soden decided she needed to do something else with her own life. She did a stint in the military, followed by work with New York’s Con Edison. At one point she was admitted to a hospital to treat a case of pneumonia. While she was in the hospital, a routine HIV test came back negative. Right after leaving the hospital, Soden received a phone call from her sister, telling her that her mother needed help; she was out of jail and abusing drugs again. “That’s when my life took a downward spiral for three years,” Soden says. “So here I was, the talented, athletic one, sit36
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ting in a drug den with my mother, trying to get her out, and I get sucked back in.” It’s also where she met Justine, a woman with whom she carried on a three-year relationship. After those same three years with Justine and a steady flow of hard drugs and alcohol, Soden realized it was time to get away. She entered a rehab program and started seeing a therapist who helped her confront many harsh, repressed memories from childhood, including sexual abuse. It was also in the rehabilitation facility that she tested positive for HIV.
“I came from the gutter. Now I live in Los Angeles. I own property in Miami, I drive a MercedesBenz, and I’m an electrical engineer. I was a drug addict. I became HIV-positive and was in a lost world with my family. I turned my life around.” Soden realized the only way she could have been infected would have been through sexual contact with Justine. Once she found out her status, she called her sister to inquire about Justine’s health. “She said, ‘I didn’t want to tell you,’ and I said, ‘You don’t want to tell me what?’ and she said, ‘She’s dying of AIDS, and her ex-boyfriend is dying of AIDS too.’ So he infected her, and she infected me.” This pivotal moment has become a hallmark of Soden’s work—she seeks not only to heighten audiences’ awareness of HIV but also to open their eyes to the fact that women can transmit the virus to each other. Soden learned that her girlfriend had a viral load of a million, meaning she had AIDS. While transmission between
women who have sex with women (or WSW) is rare, it does occur. For Soden, rough sex or sexual activity during menstruation was most likely the source of her infection. “It’s not about the gender. It’s about the act of sex,” she says. “Granted, it’s a little harder to happen, when we’re talking about female-to-female transmission, but as soon as you introduce blood to the equation that risk goes up exponentially.” Once Soden achieved sobriety in 1996, she decided it was time to turn her life back around. Through her friendship with Queen Latifah, Soden went back to work in the entertainment industry as a bodyguard and then in various behind-thescenes positions at the Oxygen television network. Hollywood producers showed interest in her life story after she self-published a memoir, but she felt few of them knew how to get her story right. Instead of waiting for Hollywood to figure it out, Soden, who was by then finishing up her electrical engineering degree at Florida International University, decided to try writing her own autobiographical one-woman show. She tested the show at FIU and Florida Memorial University to rave reviews. That’s when she contacted her brother Troy Carter, who was raised by their father and now manages pop superstar Lady Gaga. “He asked me to fly out to L.A. over spring break, and he said, ‘Let me see what you can do,’ ” she says. “So I sat right with Troy on Sunset Boulevard and I told him all about the show. He loved it and he cut me a check right there on the spot and he told me to perform all over the United States, anywhere that I could get a gig.” Carter’s investment resulted in a show where Soden walks the audience through her journey, complete with 24 tracks of music and a short film that she produced. She says she’s most fulfilled when she hears from audience members who say her story has helped them better understand friends and family members with HIV, or people who are also survivors of drug use or sexual assault. “I just want to inspire people,” she says. “I came from the gutter. Now I live in Los Angeles. I own property in Miami, I drive a Mercedes-Benz, and I’m an electrical engineer. I was a drug addict. I became HIV-positive [and was] in a lost world with my family. I turned my life around.” ✜
Soden (right) spreads the love.
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Is Anyone Immune to HIV?
Timothy Ray Brown, the Berlin patient, speaking at the International AIDS Conference in Washington, D.C.
T.J. Kirkpatrick/Ge tt y Images
A genetic mutation that blocks HIV may hold the key to future treatment and, perhaps, a cure
even the most careful individuals can find themselves with a positive HIV diagnosis, while others couldn’t get the disease if they tried. Researchers are exploring the possibility of a treatment for HIV based on a genetic mutation that makes some people nearly immune to HIV infection. This mutation, called delta 32, keeps a protein called CCR5 from rising to the surface of the immune system’s T cells. When CCR5 is on the surface of a cell, HIV is able to latch on to it and infect the cell; when it is not, the cell’s “door” is effectively closed to HIV. Very few people have this genetic variation, which some scientists think has been passed down from ancestors who survived the massive bubonic plague in Europe centuries ago. About 1% of Caucasians have two copies of the HIV-shielding gene (inherited from each parent), the number needed to make them highly resistant to the virus, though having only one copy of the gene still gives a person a better defense against HIV than none. The mutation is even rarer in Native Americans, Asians, and Africans. The idea of testing for the variation was once popular but aroused controversy, partly because of worries that it would lead to a decline in safer-sex practices. At least one genetic testing company, 23andMe, still includes such a screening among its battery of tests (not as a standalone), though many companies that once marketed tests for the mutation specifically to gay men
have closed. The genetic method, however, has figured in at least one apparently successful treatment for HIV. Timothy Ray Brown, the so-called Berlin patient, was cleared of the virus after receiving bone marrow transplants to treat his leukemia; the transplants included stem cells with the mutation, which his doctors believed would make the procedure fight his HIV as well as the leukemia. Such transplants are not practical as a widespread HIV treatment, though; in Brown’s case doctors had great difficulty finding a donor who not only had two copies of the mutation but matched other components of Brown’s immune system closely enough that his body would not reject the cells. Instead, researchers are now focusing on the possibility of introducing the rare genetic mutation into a patient’s body, infusing T cells that have been modified so as to have the CCR5-delta 32 variation. Under the sponsorship of the National Institutes of Health, researchers at the University of Pennsylvania Perelman School of Medicine in Philadelphia, the Fred Hutchinson Cancer Research Center in Seattle, and other institutions and biomedical companies are conducting research on this process, first to assess its safety, then its effectiveness. The latter will involve stopping study participants’ antiHIV medications to see if their immune systems continue to suppress the virus. Doing similar research will
be the Timothy Ray Brown Foundation, which Brown has formed in partnership with the World AIDS Institute. “The Timothy Ray Brown Foundation will be solely dedicated to finding a cure for AIDS,” Brown said at the International AIDS Conference in July. Whether Brown has actually been cured of his HIV infection is the subject of some controversy. Some tests have shown tiny traces of HIV in various parts of his body, and there are scientists who say this calls his cure into question. Others say the results could be false positives due to contamination in the laboratory or note that, in any case, the virus does not appear to be reproducing, meaning he is essentially cured just the same. At the conference Brown asserted unequivocally that he has been cured. “Despite what you may have read and heard recently in the media, I am cured of the AIDS virus.” He thanked his doctors for the “cutting-edge treatment” he received, adding that he wants to bring similarly groundbreaking therapies to other people. “This foundation will support and invest in cutting-edge therapies and treatments that show promise and have the potential to lead to the end of this disease,” he said. “If it weren’t for my own doctor in Berlin, who took a chance on an alternative therapy, I would not be standing here in front of you as living proof that there is, and could be, a cure for AIDS.” —Trudy Ring
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case studies
News You Can Use
The AIDS Drug Assistance Program, cure strategies, requiring condoms in porn movies, and more —Camille Beredjick
The Deadly Drug War Activists call on Congress to end a funding ban to fight HIV
the nation’s ongoing war on drugs leads to the spread of HIV, says a new coalition of leaders that includes a famous billionaire and a former secretary of State. Mostly they’re worried about intravenous drug users who share needles, a habit that can spread the virus. The 22-page report from the Global Commission on Drug Policy argues that fear of jail time sends injection-drug users into an underground where they’re more likely to share a needle than risk getting a clean one from a needle exchange or other government programs. And even if needle users wanted a safer route, these needle exchange programs are increasingly hard to find in the U.S. Critics in Congress say the exchanges increase crime and send addicts the wrong message, so in 2011 lawmakers reinstated a ban on federal funding for them here and abroad. Those signing the report include British Virgin magnate Richard Branson, six former presidents of foreign countries, former Federal Reserve chairman Paul Volcker, and George Shultz, who is a former secretary of State and of the Treasury and Labor departments. The bipartisan group argues that the drug war only worsens
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the problem in the United States because inmates are at increased risk for contracting and then spreading the disease. According to Time magazine, the number of people in prison for drug charges has increased 10-fold since President Ronald Reagan began a war on drugs in the early 1980s. Today more than 50% of federal prison inmates are there on drug convictions, and 1.66 million Americans were arrested on drug charges in 2009 alone, the majority simply for possession. According to Branson and other leaders, 25% of all Americans who are infected with HIV pass through correctional facilities each year. Those who are on medication often find treatment interrupted by their incarceration, which the group warns can lead to HIV drug resistance. “Arresting and imprisoning nonviolent people who use drugs must end,” says Branson, who issued a statement arguing that it’s more expensive to prosecute and imprison drug users than to offer treatment. “Refusing to implement such proven public health measures that reduce HIV infection and protect people who use drugs is criminal,” he says. —Lucas Grindley
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✚ The Scripps Research Institute has been awarded a grant of more than $77 million from the National Institutes of Health for a seven-year project to develop an HIV vaccine. The Center for HIV/AIDS Vaccine Immunology & Immunogen Discovery will research immune responses that can prevent infection with the virus or control it in infected people. ✚ Researchers have identified a critical factor in the development of cardiovascular disease in people with HIV. Microbial translocation, or bacteria leaking from the intestine into the bloodstream, causes chronic inflammation and can drive the development of such disease in HIVpositive people. ✚ Los Angeles County will vote in November on a measure that would require condom use by adult-film performers. Producers would have to obtain public-health and film permits that would allow county officials to inspect sets and enforce the condom law. The measure is part of an ongoing campaign by groups such as the AIDS Healthcare Foundation and For Adult
Industry Responsibility for steps to reduce the spread of STDs, including HIV, among performers in pornography. ✚ Newborn children of HIV-positive mothers are less likely to contract the virus if the infants are given a combination of AZT and one or two other drugs within 48 hours of birth. A UCLA-led study found that giving an infant either AZT with nevirapine or AZT with nelfinavir and lamivudine reduced the risk of HIV transmission by about half compared with giving AZT alone. ✚ Eighty-one countries increased their domestic spending on AIDS by more than 50% between 2006 and 2011, according to a new report by the Joint United Nations Programme on HIV/AIDS. Low- and middle-income countries invested $8.6 billion in responding to HIV/AIDS in 2011, an 11% increase from 2010. ✚ The New York Court of Appeals has dismissed an HIV-positive man’s conviction on a charge of aggravated assault for biting a police officer. The charge arose from David Plunkett’s altercation with an officer in 2006; his saliva was considered a “dangerous instrument” because he has HIV, although the officer did not become infected. The court clarified that saliva does not qualify as a dangerous instrument under the law and sent the case back to a lower court for resentencing. Plunkett has been serving a 10-year term.
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✚ The Obama administration will allot nearly $80 million in grants to increased HIV/AIDS care access, particularly for low-income people. Most will go toward eliminating AIDS Drug Assistance Program waiting lists in 25 states and territories. The rest will be distributed to community-based health clinics nationwide.
Under the Sea
Scientists look to the ocean for help in eradicating HIV While medication has been able to keep HIV at bay for many people, ridding the body of dormant virus, stored in so-called reservoirs, is still a challenge. However, a set of compounds known as “bryologs” (based on a substance derived from bryozoans, tiny marine organisms) may help flush out cellular reservoirs in which latent HIV hides. Highly active antiretroviral therapy, or HAART, can drastically reduce active HIV in a person’s body. But a missed dose of HAART medication can prompt the dormant HIV, hidden in reservoirs, to reactivate and attack the immune system. “[Eliminating HIV is] really a two-target problem, and no one has successfully targeted the latent virus,” Stanford University professor Paul Wender says. Scientists discovered a few years ago that a naturally occurring bryozoan substance could help reactivate latent HIV so it can be treated. The substance proved so rare that supply could not meet demand, and caused numerous side effects. Wender and his team are now making synthetic copies of the substance that are as effective as the original but can be produced in larger quantities and have fewer side effects. These copies are being tested in animals, and these tests may be the first step toward a therapy that could eradicate HIV from the body. Meanwhile, scientists at Merck Research Laboratories have also been working on new ways to purge persistent infection of HIV from the body. Their study offers early evidence that drugs used to treat lymphoma can dislodge reservoirs of hidden virus in patients. Wender also says flushing these reservoirs is critical. “I receive letters on a regular basis from people who are aware of our work—who are not, so far as I know, scientifically trained, but do have the disease,” Wender told Science Daily. “The enthusiasm they express is pretty remarkable. That’s the thing that keeps me up late and gets me up early.” —Michelle Garcia
Cured or Cleared? They have undetectable viral loads, so why are these men not considered cured?
thirty years into the aids epidemic, three men who were HIV-positive are now disease-free. Following the case of the now-famous Berlin patient (who was reportedly cured of HIV five years ago), two more men have been cleared of the virus, researchers announced at the 19th International AIDS Conference in Washington, D.C., in July. The men were HIVpositive and treated for cancer with bone marrow transplants. More than two years later, HIV cannot be detected in their bloodstreams. Their results echo the case of the Berlin patient, the informal name assigned to Timothy Ray Brown, an American man reportedly cured of HIV from bone marrow transplants in Berlin. The two stem cell transplants that treated Brown’s acute leukemia came from a donor with delta 32, a genetic mutation that makes cells resistant to HIV infection. The transplants replaced his infected cells with the HIV-resistant cells, clearing his body of the virus. In light of Brown’s new diagnosis, doctors at Brigham and Women’s Hospital in Boston studied patients who had leukemia or lymphoma as well as HIV who had received bone marrow stem cell transplants. They found two HIV-positive patients who had been treated at Brigham and Women’s for lymphoma, one who received his transplant two years ago and the other four years ago. Eight months post-transplant, HIV was undetectable in their bodies.
One of men had been positive since the early 1980s and is now in his 50s. The other is a man in his 20s who was infected at birth. Doctors could detect HIV DNA in their cells immediately before and after the transplants, but as the donor cells replaced the patients’ cells, every trace of the HIV disappeared. Unlike Brown, both of these men received transplants with normal stem cells rather than mutated cells thought to have a natural immunity to HIV. Both men remain HIV-free, but researchers are being careful not to use the word “cured”—at least until the men have been off of medications for multiple years with no rebound of HIV in their blood. Brown, on the other hand, has not taken antiretroviral drugs for five years and is considered functionally cured. Right now, says Daniel Kuritzkes, a physician-researcher at Brigham and Women’s Hospital who oversaw the study, bone marrow transplants remain too costly, painful, and potentially dangerous to perform on the millions of healthy people who have HIV, but these cases offer new hope. “It is possible that in the future the technology will improve to the point that such transplants can be attempted,” Kuritzkes says. “But not at this time.” Researchers plan to study additional HIV-positive patients who have undergone a bone marrow transplant to see what any of this might mean for other HIVers. —Camille Beredjick
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you 2.0 nutrition
Bite by Bite Why should indulgence be measured by how bad something is for us? Easy answer: It shouldn’t. A few savvy ingredient choices make for a delectable, healthful, dessert
to make your diet healthy, you’ll want to ensure that every meal and snack you consume has a combination of the three main macronutrients: carbohydrates with protein, fiber, and fat. You can easily get these macronutrients from fresh, high-quality sources, so when baking, for instance, avoid using white flour—it has been processed to death and its nutrients have been bleached away. Instead, you can make your own flour by grinding some old-fashioned oatmeal with some of your favorite seeds or nuts (pumpkin, almonds, sunflower, and flax are all good). Place the mix in your blender or food processor until it has a flour consistency and use it exactly as you would white flour. For a deliciously nutty flavor you can roast the nuts or seeds first. Skip white sugar as well, and use brown sugar, honey, or molasses as your sweetener. (The rule to follow is very simple: Any white food has fewer nutrients than colorful ones.) Here’s what you’ll need to make this delicious and, yes, healthy cobbler:
A Healthy Strawberry Cobbler ••¼ cup almond flour ••¼ cup oat flour ••¼ cup rice flour ••1 cup brown sugar ••½ cup honey ••Pinch of salt ••1 teaspoon baking powder ••1 cup of your favorite milk (I used almond milk, but you can use soy or cow’s milk if you prefer) 42
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••4 cups fresh strawberries (sliced) ••Juice and zest of 1 lemon ••½ teaspoon vanilla extract ••2 tablespoons of your favorite rum or brandy (optional) ••1 teaspoon ground cinnamon or nutmeg (optional)
Preparation
1. Spray a 13-by-9-inch baking dish. Preheat oven to 375 degrees. 2. In a medium bowl, combine flour, sugar, baking powder,
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and salt. Add milk and vanilla, stirring until dry ingredients are moistened. Pour batter over sprayed pan. 3. Bring honey, strawberries, lemon juice, and zest to a boil over high heat, stirring constantly. If you’re using it, add the rum to the fruit mixture. Pour over the batter but do not stir. Sprinkle with cinnamon or nutmeg if desired. Bake at 375 degrees for 45 minutes or until golden brown. Serve cobbler warm or cool.
Ramon Ruiz is a New York–based private chef and the chief baker behind Gingerbirdstore Organic Bakery (with his partner, Jon Rappleye) and the chief creator of Underground Supper Club in Jersey City, N.J. Follow him at RamonRuizPersonalChef. blogspot.com.
How Do You Know When It’s More Than Just Anxiety? It’s easy to get anxious or depressed, especially when you’re juggling career, family, and HIV. But, it could be more than just worry. Generalized anxiety disorder is a mental health condition that requires professional help. It’s characterized by excessive worrying about perceived danger in everyday situations. Symptoms include:
health
Keeping Depression at Bay
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A form of meditation actually works as well as antidepressants in preventing recurrence of depression, a common side effect of HIV
for anyone who’s suffered a bout of depression, keeping it from returning is a big concern. But a recent study offers a surprising finding: Meditation is an effective alternative to antidepressants when it comes to a preventing a patient’s relapse into depression. A report by Zindel Segal, Ph.D., and colleagues in the December 2010 Archives of General Psychiatry concluded that for individuals who are unable or unwilling to use antidepressants as maintenance treatment for depression, a form of meditation called mindfulnessbased cognitive therapy (MBCT) offers equal protection. “It’s not so far-fetched that both antidepressants and mindfulness meditation can have similar effects,” says Alice Boyes, Ph.D., a clinical psychologist practicing in Christchurch, New Zealand. “Both antidepressants and mindfulness help calm people’s systems so their responses to daily stressors are less spiky. When someone’s mood is low or their anxiety is high, their thoughts tend to become sticky. Mindfulness can help reduce this stickiness/rumination just as antidepressants do.” In other words, meditation gives the mind time off from constant activity, and both meditation and medication are known
to have direct effects on brain functioning. “People typically see their thoughts as facts,” says Boyes. “Traditional cognitive behavioral therapy teaches people to reality-test their thoughts. However, even when people recognize that a thought isn’t logically true, they might still be bothered by intrusions of that thought, usually when their mood is low or their anxiety is high.” MBCT can help a person develop awareness skills to more quickly recognize when they are ruminating or dwelling on negative thoughts, learn to shift their attention when they notice themselves ruminating, and become less avoidant in the presence of difficult emotions. When individuals experience low mood and high anxiety, MBCT helps them choose actions that are antidepressive (like meditation) rather than stress-generating (like obsessing over your overflowing in-box). “You get absorbed in thought, you notice, and you bring your attention back to whatever you really want to focus on,” Boyes explains. It’s important to note that meditation is helpful for everyone, but MBCT is recommended only for relapse prevention, not for the general treatment of depression. —Stephanie Schroeder
•constant fear, often without any discernible cause •upset stomach, often accompanied by diarrhea •inability to sleep •irritability •inability to focus •diminished sex drive •muscle tension and aches •overeating or undereating Signs of anxiety in children include:
•fear of being left or taken from the family •fear of strangers beyond normal caution •refusal to go to school •fear of going to sleep •recurring nightmares Seek professional help if your feelings of anxiety:
•seem unwarranted or abnormally severe •affect your ability to work or socialize •bring on panic attacks •cause weight loss or bulging of the eyes (signs of thyroid problems)
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STATUS SYMBOLS mind+mood
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Gary McClain, Ph.D.
Battling Burnout How to talk yourself out of drug regimen exhaustion
a young man who worked in a restaurant in my neighborhood recently passed away. I learned that he had stopped taking his HIV medication. He experienced debilitating symptoms and was taken to the emergency room, then moved to intensive care, where he died. I started with a new client who had not been taking her medications consistently. In her words, she “just got lazy.” She and her physician are now working together to find a routine that will work. My clients often talk about the impact that being compliant with their HIV regimen has on their lives, the frustrations, the annoyances, or just not seeing why it is such a big deal: “The routine has become boring and I miss my old life”; “I’m seeing some side effects that I don’t like”; “I’m feeling fine. I can’t believe that skipping a pill here or there is going to make any difference”; “I am tired of feeling different from everybody else”; “I want to be normal again.” I’ve heard all these excuses before. So how is your treatment going? Are you tired of the grind? Are you having down days? Are you trying to get over feeling like an outsider? Here are some ideas to help you stay on the path:
during those times when you are feeling especially discouraged. Your treatment routine may present some challenges, but what’s the upside? Is your regimen helping you maintain what’s good in your life? The cup may feel half empty, but it is also at least half full.
Be part of a community. I find that so many individuals facing HIV are going it alone and keeping their diagnosis to themselves. Traveling this path solo can be lonely. Talk to others who have been diagnosed with your condition. Learn what they do to stay on the path. Share some tips and give each other some encouragement. Support is power. Don’t let your fear of stigma keep you isolated.
Maintain your perspective. Staying on the drug compliance path is a onestep-at-a-time, one-day-at-a-time process. But humans have a tendency to do a lot of what-if-ing and awful-izing. Our minds can create a bleak future, filled with scary possibilities but devoid of the facts, which can lead us to wonder, Why bother? We only know what we can know today. Taking the best care of yourself is the best you can do for yourself. Flood the fear with facts.
Focus on what’s good in your life. It might help to make a list of the blessings in your life and then review your list
See if anything needs to be tweaked. It may be time to finetune your day-to-day life management, including diet, exercise, and how you schedule your day. Your attitude is important too. Burnout can also be a sign that something in your life needs to be evaluated and potentially changed for the better. If something’s not working, maybe it’s time to have a conversation with your doctor. Don’t let other people make you feel bad about yourself. Nobody asks to have a chronic condition or to face the daily challenges that come along with it. You certainly didn’t. Educate and reassure your family members and friends as much as they will allow you to. Get support from supportive people and stop expecting support from the people who just can’t give it to you.
Consider the alternative. Maybe it’s time for some tough love. If all else fails,
bring in the heavy artillery and think about what it means if you do not take your medications—medical complications, disability, and death are all possibilities. Remaining compliant is most likely preventing symptoms from recurring and possibly helping to prevent further problems down the road. And it allows you to be the best you can for yourself and the people you care about. In that way, your medication regimen is similar to an insurance policy. Take care of your emotions. When you aren’t feeling well physically, you go to a doctor. When you feel overwhelmed emotionally, this is a good time to reach out to a mental health professional. Find a safe place to talk about your feelings, including the “bad” ones. It’s OK to vent. But also keep in mind that staying compliant with your medication and selfcare regimen is not only the result of whether you are feeling it or not. Taking the best possible care of yourself is a rational decision. I know that on those days when you are feeling your worst or when it’s difficult to be compliant, it’s hard not to ask the “Why me?” question. But staying complaint is a decision that you make and that you decide to stick with, even on those days when it’s the last thing you want to do. You do it because you have to do it. So most of all, remind yourself—every day—that you are worth all the work and all the inconvenience your regimen entails. Gary McClain is a counselor in New York City with a specialty in coping with chronic health conditions. His books include The Complete Idiot’s Guide to Breaking Bad Habits and Empowering Your Life With Joy.
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STATUS SYMBOLS bedside manner
Why Equality Matters
W
Realizing that antigay stigma is actually killing some of her patients, one physician rethinks the debate over same-sex marriage
hen i first met José, he was already intubated in the intensive care unit, breathing only with the help of a ventilator. Suffering severe pneumonia, he had been found unconscious in his apartment by the landlord. José wore a crucifix on a chain around his neck, and he had a business card for the local LGBT center and a bottle of HIV medication in his pocket. There were no documents to confirm his identity. For weeks my medical team and I meticulously watched over José’s physical health. Twice his lungs collapsed, and we put in several catheters to reinflate them. Five times he went into respiratory failure despite being on maximal mechanical support. We spent hours manually pushing air through his breathing tube to keep him alive. A multitude of continuous IV medications and blood products maintained a semblance of vital signs. Drains in his bottom kept him clean and dry. We could not feed him because he had persistent bloodstream infections. Every week the quality assurance team came by to ask, “What are your care goals?” This is usually a question my medical team and I would discuss with the patient or a patient’s family. But José could not be awakened and no one ever came to see him. Fingerprinting turned up no leads. No missing persons report had been filed fitting his description. We called the doctor who wrote José’s prescriptions. He gave us the number for an emergency contact, but that man said he had not seen or heard from José for months and knew no personal information about him. José’s profound disconnectedness troubled me. Every day his nurse and I evaluated all his tubes, medications, and machine settings with extra care, trying to compensate for his loneliness. I would squeeze his hand for a moment before I left, though I wondered if he was still
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with us in this world. The immensity of his solitude weighed on me. He could pass away without anyone who had ever mattered to him having a clue. How did José become so cut off? Was it because he was gay or HIV-positive or something else altogether? Working in a safety net hospital, I have cared for many people like José, who are hanging by mere threads in the margins of society. What kills them, and often in heartbreaking ways, is not their physical illness. It’s their social isolation. Stigma is the cultural stress that ultimately extinguishes their lives. When academics talk about vulnerable populations, they are usually referring to people who have no money and no power, or who need public assistance to thrive. Health care disparities are defined along demographic factors like ethnicity, income, employment, education, and marital status. Ultimately, though, what makes certain groups more vulnerable than others is not the category they identify, or are identified, with; it’s how connected they are to other human beings. Poor people can belong to strong communities that will take care of them in times of need, and thus be resilient. The same goes for people who are unemployed, disabled, or uneducated. People end up on the street only when they don’t have anyone at all. It is in this light that I have come to appreciate marriage equality as an important and relevant policy issue for our society. Beyond civil rights and basic human dignity, marriage creates a connectedness that is protective against life’s unknowns. When crisis strikes, it is a buffer that prevents people from ending up like José, who essentially became a ward of the state. What cause does the public have to deny equal benefits to consenting adults who want to make a lifelong commitment to each other? Why do we still quibble over gender when so much collective good is at stake? The same month I took care of José, I met
Oscar and his “cousin” Eddie. Like José, Oscar also came to the hospital with severe pneumonia, but Eddie was with him and brought him in when his condition was less critical. I was able to counsel both of them about intubation when breathing became too difficult. Oscar designated Eddie as his health care proxy. As long as Eddie was there, Oscar did not require much sedation or pain medication. We could see how quickly his heart rate and blood pressure improved with Eddie by
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E. Wu
his side. One quiet night I finally asked Eddie why he introduced himself as Oscar’s “cousin” when it was obvious that he was his partner. Eyes to the ground, Eddie muttered that he was afraid we’d kick him out if we didn’t think he was “family.” I started to apologize if we had made him feel uncomfortable in any way, but he interrupted and said, “It’s not you. It’s Prop. 8—that’s been hard on us,” as he laid his head on Oscar’s chest. “When will you be able to take this tube out, Doctor?”
On the whole, we have enough intractable conflicts to contend with, without wasting valuable time and resources to set up more stumbling blocks for ourselves. The ultimate goal of government is to provide an infrastructure for diverse peoples to live peacefully, happily, and freely together. Marriage equality, on this level, isn’t about interpretations of religious text, historical precedent, or legal technicalities. Moreover, it is not about whether or not the private sex lives
of two people make us feel “icky.” As far as our elected officials are concerned, marriage is a simple civil construct to bolster beneficial human connections that spill over into all aspects of our lives—at work, in schools, in hospitals, in neighborhoods, and beyond. Pride can overcome individual shame, but it takes all of us together to remove stigma. It’s time to end the unnecessary suffering. E. Wu is a physician in the Los Angeles area.
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STATUS SYMBOLS ask+tell
Tell us about your participation in the recent International AIDS Conference. I cohosted a discussion with USAID, UNAIDS, Alere—the world’s largest HIV testing technology manufacturer— and a community chief from Zambia. We highlighted the need for collaboration across different sectors to offer a complete, combined HIV prevention package. Because when we combine HIV interventions, such as male and female condoms, counseling and testing, reducing stigma and discrimination, male circumcision, among others, we are better positioned to counter the epidemic from every angle, not just one, and protect more lives.
you know debra messing from her star turn on the legendary sitcom Will & Grace and, more recently, NBC’s Broadway drama Smash. But did you know Messing is also the ambassador for Population Services International, a global health organization battling AIDS and malaria in Third World nations? Messing recently traveled to Zambia to witness HIV prevention efforts there, including male circumcision procedures. We caught up with the star to talk about her mission to end AIDS. —Neal Broverman Can you tell us about the first person you knew who had HIV? Twenty years ago, my favorite acting teacher, for whom my son is named, died of AIDS complications. His death destroyed me. From that day on, I vowed I would do whatever I could to honor his life and protect others from HIV and AIDS. How did you get involved in PSI? I became aware of PSI through colleagues. I really liked PSI’s approach and focus. Ninety-three cents of every dollar PSI raises goes directly to health programs in 67 countries around the world. Three years ago I traveled to Zimbabwe with PSI and UNAIDS to learn more about the HIV pandemic in sub-Saharan Africa. I returned to neighboring Zambia this past May. Those trips opened my eyes to the degree to which HIV/AIDS ravaged
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families and economies in Africa. But most importantly, they opened my eyes to the tremendous progress that the U.S. and the global community have made to reduce HIV stigma and discrimination and expand lifesaving prevention and treatment programs worldwide. What do you want to accomplish as PSI ambassador? I’m fortunate to have a job that gives me a platform to speak to many people. In my travels, men and women have invited me into their homes and have shared their personal stories of loss, of love, and of life. They have entrusted me with these stories. My goal is to amplify their voices and tell their stories to those who have the power to build a stronger global response to the AIDS epidemic. I want to be part of the solution.
What were some things that surprised you on your trip to Africa? I was shocked by the story of Irene, a woman I met in a community support center. A few years ago, Irene developed sores on her hands and over her body. She didn’t understand why, and she was in such pain that it was difficult for her to simply move. But the physical pain wasn’t the worst part. Irene was a greeter at her church, something she loved to do. But when she started getting visibly sick, people would not go near her. They told her flat out that she had AIDS, that she was going to die, and she began to believe them. A friend insisted she get an HIV test and, as suspected, Irene tested positive. When she shared the news with her son, instead of offering support he spat on her... As Irene recounted this story to me, I was surprised to see relief come across her face. The fact that she was able to share her story somehow lessened her pain. Clearly she needed to be heard and needed compassion. Today, with medication and support, Irene is healthy and thriving. ✜
courtesy psi
She’s Not Messing Around
You witnessed a circumcision in Zambia. Why? Male circumcision can reduce HIV transmission from women to men by as much as 60%. In both Zimbabwe and Zambia, I had the privilege of meeting men who chose to have the safe, voluntary procedure done. I held their hands during the procedure and sang “You Are My Sunshine”—which turned out to be much more painful than the procedure itself! It took all of 10 minutes, and they each told me how proud and excited they were to have this done. As an American, I was incredibly proud of our government’s efforts, along with the British government, UNICEF, the Bill and Melinda Gates Foundation, and the Global Fund, to take male circumcision programs to scale in Africa.
I am a devoted son, a singer, and an artist. And I am living with HIV. TM
Jamar has lived with HIV since 2006.
Get the facts. Get tested. Get involved. www.ActAgainstAIDS.org
Hey, have you heard the news? For eligible patients, Merck covers up to $400 on out-of-pocket costs, for each of up to 12 prescriptions.
Savings Coupon for ISENTRESS (raltegravir) 400mg Film-Coated Tablets: eligibility restrictions, terms, and conditions apply.a To find out more visit isentress.com. 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. a For
eligible privately insured patients. Not valid for residents of Massachusetts. Restrictions apply. Please see full Terms and Conditions on isentress.com.
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