STIGMA-FREE T R E AT M EN T & H E A LT H N E W S
NOVEMBER/DECEMBER 2014
www.hivplusmag.com
What is STRIBILD? STRIBILD is a prescription medicine used to treat HIV-1 in adults who have never taken HIV-1 medicines before. It combines 4 medicines into 1 pill to be taken once a day with food. STRIBILD is a complete singletablet regimen and should not be used with other HIV-1 medicines. STRIBILD does not cure HIV-1 infection or AIDS. To control HIV-1 infection and decrease HIV-related illnesses you must keep taking STRIBILD. Ask your healthcare provider if you have questions about how to reduce the risk of passing HIV-1 to others. Always practice safer sex and use condoms to lower the chance of sexual contact with body fluids. Never reuse or share needles or other items that have body fluids on them.
IMPORTANT SAFETY INFORMATION What is the most important information I should know about STRIBILD?
• Worsening of hepatitis B (HBV) infection. If you also have HBV and stop taking STRIBILD, your hepatitis may suddenly get worse. Do not stop taking STRIBILD without first talking to your healthcare provider, as they will need to monitor your health. STRIBILD is not approved for the treatment of HBV.
• Take a medicine that contains: alfuzosin, dihydroergotamine, ergotamine, methylergonovine, cisapride, lovastatin, simvastatin, pimozide, sildenafil when used for lung problems (Revatio®), triazolam, oral midazolam, rifampin or the herb St. John’s wort. • For a list of brand names for these medicines, please see the Brief Summary on the following pages.
• If you take hormone-based birth control (pills, patches, rings, shots, etc).
• Take any other medicines to treat HIV-1 infection, or the medicine adefovir (Hepsera®).
• If you take antacids. Take antacids at least 2 hours before or after you take STRIBILD.
What are the other possible side effects of STRIBILD?
• If you are pregnant or plan to become pregnant. It is not known if STRIBILD can harm your unborn baby. Tell your healthcare provider if you become pregnant while taking STRIBILD.
Do not take STRIBILD if you:
Serious side effects of STRIBILD may also include:
• Build-up of an acid in your blood (lactic acidosis), which is a serious medical emergency. Symptoms of lactic acidosis include feeling very weak or tired, unusual (not normal) muscle pain, trouble breathing, stomach pain with nausea or vomiting, feeling cold especially in your arms and legs, feeling dizzy or lightheaded, and/or a fast or irregular heartbeat.
• New or worse kidney problems, including kidney failure. Your healthcare provider should do regular blood and urine tests to check your kidneys before and during treatment with STRIBILD. If you develop kidney problems, your healthcare provider may tell you to stop taking STRIBILD.
• You may be more likely to get lactic acidosis or serious liver problems if you are female, very overweight (obese), or have been taking STRIBILD for a long time. In some cases, these serious conditions have led to death. Call your healthcare provider right away if you have any symptoms of these conditions.
• All your health problems. Be sure to tell your healthcare provider if you have or had any kidney, bone, or liver problems, including hepatitis virus infection. • All the medicines you take, including prescription and nonprescription medicines, vitamins, and herbal supplements. STRIBILD may affect the way other medicines work, and other medicines may affect how STRIBILD works. Keep a list of all your medicines and show it to your healthcare provider and pharmacist. Do not start any new medicines while taking STRIBILD without first talking with your healthcare provider.
Who should not take STRIBILD?
STRIBILD can cause serious side effects:
• Serious liver problems. The liver may become large (hepatomegaly) and fatty (steatosis). Symptoms of liver problems include your skin or the white part of your eyes turns yellow (jaundice), dark “tea-colored” urine, light-colored bowel movements (stools), loss of appetite for several days or longer, nausea, and/or stomach pain.
What should I tell my healthcare provider before taking STRIBILD?
• Bone problems, including bone pain or bones getting soft or thin, which may lead to fractures. Your healthcare provider may do tests to check your bones. • Changes in body fat can happen in people taking HIV-1 medicines. • Changes in your immune system. Your immune system may get stronger and begin to fight infections. Tell your healthcare provider if you have any new symptoms after you start taking STRIBILD. The most common side effects of STRIBILD include nausea and diarrhea. Tell your healthcare provider if you have any side effects that bother you or don’t go away.
• If you are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed. HIV-1 can be passed to the baby in breast milk. Also, some medicines in STRIBILD can pass into breast milk, and it is not known if this can harm the baby.
You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088. Please see Brief Summary of full Prescribing Information with important warnings on the following pages.
STRIBILD is a prescription medicine used as a complete single-tablet regimen to treat HIV-1 in adults who have never taken HIV-1 medicines before. STRIBILD does not cure HIV-1 or AIDS.
I started my personal revolution Talk to your healthcare provider about starting treatment. STRIBILD is a complete HIV-1 treatment in 1 pill, once a day. Ask if it’s right for you.
Patient Information STRIBILD® (STRY-bild) (elvitegravir 150 mg/cobicistat 150 mg/emtricitabine 200 mg/ tenofovir disoproxil fumarate 300 mg) tablets Brief summary of full Prescribing Information. For more information, please see the full Prescribing Information, including Patient Information.
• Do not stop taking STRIBILD without first talking to your healthcare provider • If you stop taking STRIBILD, your healthcare provider will need to check your health often and do blood tests regularly for several months to check your HBV infection. Tell your healthcare provider about any new or unusual symptoms you may have after you stop taking STRIBILD
What is STRIBILD?
Who should not take STRIBILD?
• STRIBILD is a prescription medicine used to treat HIV-1 in adults who have never taken HIV-1 medicines before. STRIBILD is a complete regimen and should not be used with other HIV-1 medicines. • STRIBILD does not cure HIV-1 or AIDS. You must stay on continuous HIV-1 therapy to control HIV-1 infection and decrease HIV-related illnesses. • Ask your healthcare provider about how to prevent passing HIV-1 to others. Do not share or reuse needles, injection equipment, or personal items that can have blood or body fluids on them. Do not have sex without protection. Always practice safer sex by using a latex or polyurethane condom to lower the chance of sexual contact with semen, vaginal secretions, or blood.
Do not take STRIBILD if you also take a medicine that contains: • adefovir (Hepsera®) • alfuzosin hydrochloride (Uroxatral®) • cisapride (Propulsid®, Propulsid Quicksolv®) • ergot-containing medicines, including: dihydroergotamine mesylate (D.H.E. 45®, Migranal®), ergotamine tartrate (Cafergot®, Migergot®, Ergostat®, Medihaler Ergotamine®, Wigraine®, Wigrettes®), and methylergonovine maleate (Ergotrate®, Methergine®) • lovastatin (Advicor®, Altoprev®, Mevacor®) • oral midazolam • pimozide (Orap®) • rifampin (Rifadin®, Rifamate®, Rifater®, Rimactane®) • sildenafil (Revatio®), when used for treating lung problems • simvastatin (Simcor®, Vytorin®, Zocor®) • triazolam (Halcion®) • the herb St. John’s wort Do not take STRIBILD if you also take any other HIV-1 medicines, including: • Other medicines that contain tenofovir (Atripla®, Complera®, Viread®, Truvada®) • Other medicines that contain emtricitabine, lamivudine, or ritonavir (Atripla®, Combivir®, Complera®, Emtriva®, Epivir® or Epivir-HBV®, Epzicom®, Kaletra®, Norvir®, Trizivir®, Truvada®) STRIBILD is not for use in people who are less than 18 years old.
What is the most important information I should know about STRIBILD? STRIBILD can cause serious side effects, including: 1. Build-up of lactic acid in your blood (lactic acidosis). Lactic acidosis can happen in some people who take STRIBILD or similar (nucleoside analogs) medicines. Lactic acidosis is a serious medical emergency that can lead to death. Lactic acidosis can be hard to identify early, because the symptoms could seem like symptoms of other health problems. Call your healthcare provider right away if you get any of the following symptoms which could be signs of lactic acidosis: • feel very weak or tired • have unusual (not normal) muscle pain • have trouble breathing • have stomach pain with nausea or vomiting • feel cold, especially in your arms and legs • feel dizzy or lightheaded • have a fast or irregular heartbeat 2. Severe liver problems. Severe liver problems can happen in people who take STRIBILD. In some cases, these liver problems can lead to death. Your liver may become large (hepatomegaly) and you may develop fat in your liver (steatosis). Call your healthcare provider right away if you get any of the following symptoms of liver problems: • your skin or the white part of your eyes turns yellow (jaundice) • dark “tea-colored” urine • light-colored bowel movements (stools) • loss of appetite for several days or longer • nausea • stomach pain You may be more likely to get lactic acidosis or severe liver problems if you are female, very overweight (obese), or have been taking STRIBILD for a long time. 3. Worsening of Hepatitis B infection. If you have hepatitis B virus (HBV) infection and take STRIBILD, your HBV may get worse (flare-up) if you stop taking STRIBILD. A “flare-up” is when your HBV infection suddenly returns in a worse way than before. • Do not run out of STRIBILD. Refill your prescription or talk to your healthcare provider before your STRIBILD is all gone
What are the possible side effects of STRIBILD? STRIBILD may cause the following serious side effects: • See “What is the most important information I should know about STRIBILD?” • New or worse kidney problems, including kidney failure. Your healthcare provider should do blood and urine tests to check your kidneys before you start and while you are taking STRIBILD. Your healthcare provider may tell you to stop taking STRIBILD if you develop new or worse kidney problems. • Bone problems can happen in some people who take STRIBILD. Bone problems include bone pain, softening or thinning (which may lead to fractures). Your healthcare provider may need to do tests to check your bones. • Changes in body fat can happen in people who take HIV-1 medicine. These changes may include increased amount of fat in the upper back and neck (“buffalo hump”), breast, and around the middle of your body (trunk). Loss of fat from the legs, arms and face may also happen. The exact cause and long-term health effects of these conditions are not known. • Changes in your immune system (Immune Reconstitution Syndrome) can happen when you start taking HIV-1 medicines. Your immune system may get stronger and begin to fight infections that have been hidden in your body for a long time. Tell your healthcare provider right away if you start having any new symptoms after starting your HIV-1 medicine.
The most common side effects of STRIBILD include: • Nausea • Diarrhea Tell your healthcare provider if you have any side effect that bothers you or that does not go away. • These are not all the possible side effects of STRIBILD. For more information, ask your healthcare provider. • Call your healthcare provider for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088. What should I tell my healthcare provider before taking STRIBILD? Tell your healthcare provider about all your medical conditions, including: • If you have or had any kidney, bone, or liver problems, including hepatitis B infection • If you are pregnant or plan to become pregnant. It is not known if STRIBILD can harm your unborn baby. Tell your healthcare provider if you become pregnant while taking STRIBILD. - There is a pregnancy registry for women who take antiviral medicines during pregnancy. The purpose of this registry is to collect information about the health of you and your baby. Talk with your healthcare provider about how you can take part in this registry. • If you are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed if you take STRIBILD. - You should not breastfeed if you have HIV-1 because of the risk of passing HIV-1 to your baby. - Two of the medicines in STRIBILD can pass to your baby in your breast milk. It is not known if the other medicines in STRIBILD can pass into your breast milk. - Talk with your healthcare provider about the best way to feed your baby. Tell your healthcare provider about all the medicines you take, including prescription and nonprescription medicines, vitamins, and herbal supplements: • STRIBILD may affect the way other medicines work, and other medicines may affect how STRIBILD works. • Be sure to tell your healthcare provider if you take any of the following medicines: - Hormone-based birth control (pills, patches, rings, shots, etc) - Antacid medicines that contain aluminum, magnesium hydroxide, or calcium carbonate. Take antacids at least 2 hours before or after you take STRIBILD - Medicines to treat depression, organ transplant rejection, or high blood pressure - amiodarone (Cordarone®, Pacerone®) - atorvastatin (Lipitor®, Caduet®) - bepridil hydrochloride (Vascor®, Bepadin®) - bosentan (Tracleer®) - buspirone - carbamazepine (Carbatrol®, Epitol®, Equetro®, Tegretol®) - clarithromycin (Biaxin®, Prevpac®) - clonazepam (Klonopin®) - clorazepate (Gen-xene®, Tranxene®) - colchicine (Colcrys®) - medicines that contain dexamethasone - diazepam (Valium®)
- digoxin (Lanoxin®) - disopyramide (Norpace®) - estazolam - ethosuximide (Zarontin®) - flecainide (Tambocor®) - flurazepam - fluticasone (Flovent®, Flonase®, Flovent® Diskus®, Flovent® HFA, Veramyst®) - itraconazole (Sporanox®) - ketoconazole (Nizoral®) - lidocaine (Xylocaine®) - mexiletine - oxcarbazepine (Trileptal®) - perphenazine - phenobarbital (Luminal®) - phenytoin (Dilantin®, Phenytek®) - propafenone (Rythmol®) - quinidine (Neudexta®) - rifabutin (Mycobutin®) - rifapentine (Priftin®) - risperidone (Risperdal®, Risperdal Consta®) - salmeterol (Serevent®) or salmeterol when taken in combination with fluticasone (Advair Diskus®, Advair HFA®) - sildenafil (Viagra®), tadalafil (Cialis®) or vardenafil (Levitra®, Staxyn®), for the treatment of erectile dysfunction (ED). If you get dizzy or faint (low blood pressure), have vision changes or have an erection that last longer than 4 hours, call your healthcare provider or get medical help right away. - tadalafil (Adcirca®), for the treatment of pulmonary arterial hypertension - telithromycin (Ketek®) - thioridazine - voriconazole (Vfend®) - warfarin (Coumadin®, Jantoven®) - zolpidem (Ambien®, Edlular®, Intermezzo®, Zolpimist®) Know the medicines you take. Keep a list of all your medicines and show it to your healthcare provider and pharmacist when you get a new medicine. Do not start any new medicines while you are taking STRIBILD without first talking with your healthcare provider. Keep STRIBILD and all medicines out of reach of children. This Brief Summary summarizes the most important information about STRIBILD. If you would like more information, talk with your healthcare provider. You can also ask your healthcare provider or pharmacist for information about STRIBILD that is written for health professionals, or call 1-800-445-3235 or go to www.STRIBILD.com. Issued: October 2013
COMPLERA, EMTRIVA, GILEAD, the GILEAD Logo, GSI, HEPSERA, STRIBILD, the STRIBILD Logo, TRUVADA, and VIREAD are trademarks of Gilead Sciences, Inc., or its related companies. ATRIPLA is a trademark of Bristol-Myers Squibb & Gilead Sciences, LLC. All other marks referenced herein are the property of their respective owners. © 2014 Gilead Sciences, Inc. All rights reserved. STBC0076 03/14
NEW CDC MATERIALS FOR YOUR PATIENTS LIVING WITH HIV
HIV Treatment Works is a new CDC campaign featuring people living with HIV who share stories about obstacles they faced entering into care and being on treatment and how they overcame those challenges. The campaign also encourages people living with HIV to live well and protect others by staying on treatment. The new HIV Treatment Works website contains videos from people living with HIV, posters for your office or clinic, and materials for your patients.
cdc.gov/HIVTreatmentWorks
IN THIS ISSUE
NOVEMBER/DECEMBER 2014 BUZZWORTHY
7 SHRINK-WRAPPED
Photographs of lovers sealed in vacuum bags are taking Tokyo by storm.
7 THREE THINGS YOU NEED TO KNOW ABOUT PAIGE RAWL
The Positive author who discovered her status in middle school shares her story.
8 A COSTLY ERROR
12
Are pharmacies too big to get prescriptions right?
YOU 2.0
KATEE SACKHOFF
44 SEVEN EASY WAYS TO GET
AFFIRMATIONS INTO YOUR LIFE Train your brain with these techniques.
44 ASK THE DOCTOR
Should your partner go on PrEP?
45 BEAT FINANCIAL STRESS IN 8 SIMPLE STEPS
You can’t afford to miss these valuable tips and tricks. TREATMENT CHRONICLES
46 GOOD NEWS FOR YOUR LIVER
A breakthrough cure for hepatitis C could be life-changing for many with HIV.
39 DAILY DOSE
An AIDS-free generation is within our grasp.
JAMES MINCHIN
MORE
FEATURES
30 THE BISEXUAL BRIDGE Experts dispel the myths around transmission.
34 UNSUNG HEROES
Maureen McGovern and Dr. Frank Spinelli talk frankly about HIV, PrEP, and Hollywood.
22 WORLD AIDS DAY
36
FUSE/THINKSTOCK
A look back at 2014’s highs and lows.
36 FINDING TRU LOVE?
An HIV-prevention drug may help bridge the “viral divide” in dating.
ON THE COVER: Katee Sackhoff by Vince Trupsin
EDITOR'S LETTER
M
A
G
A
Diane Anderson-Minshall ART DIRECTOR Bonnie Barrett COPY CHIEF Trudy Ring CONTRIBUTING EDITORS Neal Broverman, Sunnivie Brydum, Michelle Garcia, Todd Heywood, Katie Peoples ASSISTANT EDITOR Daniel Reynolds EDITORIAL INTERN Lynn De La Cruz WELLNESS EDITOR Sam Page MENTAL HEALTH EDITOR Gary McClain VIDEO CORRESPONDENT Josh Robbins
EDITOR IN CHIEF
CREATIVE DIRECTOR, DIGITAL MEDIA Dave Johnson DIRECTOR, DIGITAL MEDIA Scott Ragan
Z
I
N
E
SVP, GROUP PUBLISHER
Joe Valentino
SENIOR VP, MARKETING & BRAND STRATEGY Stephen Murray VP, INTEGRATED MARKETING Amanda Johnson SENIOR MANAGER, INTEGRATED MARKETING Steven O’Brien COORDINATOR, ADVERTISING Paige Popdan COORDINATORS, INTEGRATED MARKETING John McCourt ART DIRECTOR, INTEGRATED MARKETING Charlie Flaumer JUNIOR DESIGNER Luke Williams SENIOR DIRECTOR, MEDIA STRATEGY Stewart Nacht
Jeff Lettiere Argus Galindo PRODUCTION SERVICES GVM Media Solutions, LLC PRODUCER Yannick Delva ADVERTISING PRODUCTION MANAGER Heidi Medina MANAGER, APPLICATION FRONT END DEVELOPER Mayra Urrutia DEVELOPMENT Alex Lim TRAFFIC MANAGER Kevin Bissada
INTERACTIVE ART DIRECTOR Christopher Harrity
CIRCULATION DIRECTOR
ONLINE PHOTO AND GRAPHICS
FULFILLMENT MANAGER
HERE MEDIA SENIOR VICE PRESIDENTS Christin Dennis, Paul Colichman John Mongiardo, Stephen Murray, Joe Valentino CFO/COO Tony Shyngle VICE PRESIDENTS Greg Brossia, Eric Bui, EXECUTIVE VICE PRESIDENTS Steven Capone, Justin Garrett, Bernard Rook, Joe Landry Lucas Grindley, Amanda Johnson VP, EDITORIAL DIRECTOR Lucas Grindley CHAIRMAN
Stephen P. Jarchow
CEO
Follow us on Facebook and Twitter
Facebook.com/ HIVPlusMag
Twitter.com/ HIVPlusMag
ADVERTISING & SUBSCRIPTIONS OFFICES 120 West 45th Street, Suite 3800, New York, New York 10036-4041 Phone (212) 242-8100 • Advertising Fax (212) 242-8338 Subscriptions (212) 209-5174 • Subscriptions Fax (212) 242-8338 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 HIV/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 “digital edition” 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, 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 © 2014 by Here Publishing Inc. All rights reserved. Printed in the USA. just email our circulation department at Jeff.Lettiere@HereMedia.com.
Diane Anderson-Minshall EDITOR IN CHIEF | Editor@HIVPlusMag.com 6
HIV plus
• NOVEMBER /DECEMBER 2014
WHAT’S YOUR STORY? We want to hear from you: Email us at editor@HIVPlusMag.com or write us at HIV Plus, 10990 Wilshire Blvd., Penthouse Suite, Los Angeles, CA 90024. Visit Twitter @HIVPlusMag.
BRADFORD ROGNE
S
ince this is our Nov./Dec. issue it seems almost fitting that I talk about what I’m thankful for. I’m thankful for our small but diligent crew of writers who make me proud each issue with articles that dare to ask the questions people are asking behind closed doors. I feel proud of every article we publish, whether we focus on tearing down myths (see page 30, for Sunnivie Brydum’s feature on the stigma of bisexual men, who’ve often been blamed for being the HIV bridge to straight women) or exploring recent cultural changes (Daniel Reynolds’s feature on 36 looks at how PrEP has changed the dating scene for men with HIV ). Every celebrity or public figure who graces our cover gets my gratitude; whether HIV-positive or not, gracing a magazine with the term HIV emblazoned across the front and being willing (as this month’s cover star, actress Katee Sackhoff, was) to talk about their first HIV test, how HIV impacts them, their own struggles and joys, and just enough Hollywood gossip (because you care about more than just HIV and I hope this magazine never stops reminding you of that). This year has been one of ups and downs, with news of possible cures (still a way off), vaccine news (closer), new treatments, criminal cases, and employee lawsuits, and a state court challenge in Iowa that freed an HIV-positive man from having to be on a sex offender registry for life because someone alleged he didn’t disclose his HIV status before they had sex (even though he wore a condom and had an undetectable viral load). So for every terrible HIV headline you see in the mainstream media, we hope you see a positive one here. (And we’re working to change how other outlets report on HIV as well; it’s our social justice mission.) Check out our timeline of some of year’s best discoveries and research in our World AIDS Day Year in Review on page 22. Now on toward 2015!
BUZZWORTHY
Condomania,
an iconic condoms shop in the center of Tokyo, has enthralled artists and lovers worldwide with their new advertising. For it, Photographer Hal sealed couples together in futon-sized vacuum bags to preserve their love forever. Each couple could only be left inside the sealed bag for 10 seconds to take the shot, but the images are strangely alluring and compelling. “Human beings aren’t completed if they’re just by themselves,” says Photographer Hal. “It’s when they come together, when they come really close, that they are finally completed.”
3 THINGS YOU NEED TO KNOW ABOUT PAIGE RAWL
PHOTOGRAPHER HAL
1.
She’s written a great book. With the help of Ali Benjamin (and a kick-ass intro from author Jay Asher), 19-year-old Rawl penned a memoir, Positive (Harper Collins), about learning in middle school that she had HIV, what happened when other kids found out, and her life since. She’s currently a student at Ball State University, studying molecular biology, and hopes to become an HIV researcher.
2.
She turned adversity to activism. Two weeks after telling a friend she
was HIV-positive, bullies (many former friends) at her middle school began calling her “PAIDS” and harassing her because of her status. Administrators and teachers were no help, and her soccer coach told her it’d be an advantage because opposing teams wouldn’t want to touch her. After briefly dropping out of school in eighth grade battling stress-induced seizures and suicidal thoughts, she persevered, transferring schools, and coming out as poz in front of an auditorium of her peers.
3.
She took it to court and the air-
waves, too. Rawl could have just slinked off from that Indiana middle school, harassed, shamed, and closeted. But instead she filed a lawsuit against the school for not stopping the harassment. She became the youngest Red Cross volunteer to speak about HIV and AIDS, as well as Miss Indiana Teen Essence and Miss Indiana High School America, and she’s spoken out in media including People, Seventeen, Nick News with Linda Ellerbee, and Huffington Post. (You can find out more about her and Positive at PaigeRawl.com.) — Diane Anderson-Minshall N O V E M B E R / D E C E M B E R 2 0 1 4 • HIV plus 7
BUZZWORTHY
BAD MEDICINE Are some pharmacies too big to get the simplest prescriptions right? By Michelle Garcia
Being diagnosed with HIV is tough, and sometimes getting the
most appropriate medication can be difficult too. For Jack (not his real name) it was even worse. After Jack tested positive for HIV, his doctor prescribed Isentress and Truvada, two drugs that work together to reduce a person’s viral load. Like millions of other people, he filled the prescription at a nationwide pharmacy chain. And that’s where a significant error occurred. Jack’s attorney, Anthony Ross, says when his client’s prescription was filled, the technicians correctly logged that he needed Truvada, but instead of giving him Isentress, they prescribed him pain medication. “Because it was his initial diagnosis, and also because he was informed by his physician that he might receive generic drugs, he didn’t know he was being given the wrong drug,” Ross says. “He just assumed it was the generic version of what he’d been prescribed.” The error went uncorrected for months. Jack had his prescription filled four times, and each time he was given the incorrect drug. And even though his doctor noticed that his viral load was not responding as expected to the drugs she prescribed, nothing was done to check Jack’s medication, Ross says. In fact, the only reason the error was caught was pure luck: Without any prompting, his medical insurance provider assigned him to a different pharmacy. “They do that sometimes,” Ross says. “He hadn’t requested it, and there was no reason that he was aware of as to why that happened.” Once the new pharmacy obtained his actual prescription, Jack came home one day with different-looking pills. He called his original pharmacy and asked the staff to check whether he had been receiving the right pills. “That’s when they confirmed that he had indeed been given the wrong drug,” Ross says. During those months that Jack was on the wrong medication, he felt ill and fatigued, and his immune system took a big hit. He developed a resistance to Truvada because he was taking it without the proper companion drug. And once he found out he was being incorrectly medicated, he took a psychological hit. “As you can imagine, finding out you have HIV is one kick in the gut,” Ross says. “Then, six months later, finding out you weren’t even being treated properly for the HIV you were just diagnosed with is the second kick in the gut.” Jack is one of the many people who have been exposed to pharmacy errors like this. According to the National Patient
8
HIV plus
• NOVEMBER /DECEMBER 2014
Safety Foundation, medication errors are incredibly common. In fact, a 2006 report by the Institute of Medicine estimated that 1.5 million Americans were harmed by medication errors annually, resulting in $3.5 billion in additional medical costs. Joseph Zorek, who was a pharmacist with CVS/pharmacy (now CVS Health) for more than 30 years, filed a whistle-blower lawsuit in 2012 against the chain. In the suit Zorek said understaffing at the pharmacy created an environment where such careless mistakes could be made behind the counter. Ross says in his research in Jack’s case, he found that many pharmacies run like banks or fast-food chains, where speed is incentivized over accuracy or safety. “A lot of big chain pharmacies have systems in place where they’re trying to move people through the pharmacy quickly,” he says. “If you’re in line for a certain number of minutes, we’ll give you 50 bucks or whatever. So there’s all these incentives—sometimes they’re on the consumer side, sometimes they’re on the employee side—to get people through quickly.” Due to the agreement Ross’s client and the pharmacy reached earlier this year, the company could not be identified in this story, but it is one of the four largest drugstore chains in the U.S. When contacted for comment about the case, the company’s media representative said, “Because of privacy issues, we are unable to comment on the matter.” In the meantime, to Ross’s knowledge, the pharmacy has done little to prevent further errors, so there is still a potential for harm to people who take all kinds of medications. But for now, he suggests that everyone make a visual confirmation of the medication they’re taking by checking online to see what their pill is supposed to look like and then making sure the pill in the bottle matches up. ✜
GET OUR FREE HIV TREATMENT MOBILE APP
EATMENTGUIDE
HIVPLUSMAG.COM/TR
MOVIE IN A MINUTE A
ED JONES/GETTY IMAGES
fter she developed AIDS, Liu Ximei, an orphaned Chinese activist, started Ximei’s Home for Mutual Help, a community house shared by several other HIV-positive individuals. Chinese filmmaker Chen Shuo and dissident artist and social activist Ai Weiwei filmed her life for the riveting documentary Stay Home! which pulls no punches in showing the devastation wreaked on Ximei’s body every day. One of the film’s most heart-wrenching sequences records the effects of her interferon treatment. After Ximei takes the shot, the film shows her complaining of a headache on the way home, then curled in a fetal position with dry heaves, and finally she is taken in her bed and calls for her fever pills. She collapses on her side. The camera’s position creates a sense of Ximei’s suffering as it looks toward the ceiling from the bed. The medication she needs to stay alive also renders her completely helpless. This fragility is one aspect of the central irony of the film. How the state can be threatened by such a frail and pained person befuddles the viewer. —Anthony Merino (Re ad the full review The documentary Stay Home! paints a heart-wrenching portrait of at HIVPlusMag.com) AIDS patient Liu Ximei ( pictured above)
Each year,
17 in
people living with HIV
will pass through a correctional facility.
Source: The War on Drugs and HIV/AIDS: How the Criminalization of Drugs Use Fuels the Global Pandemic; June 2012; Global Commission on Drug Policy
N O V E M B E R / D E C E M B E R 2 0 1 4 • HIV plus 9
BUZZWORTHY
New Orleans With a Cause Your Big Easy trip can benefit people living with HIV
I f there was ever a reason to go to New Orleans it’s this: The 31
team up to tackle the spread of hepatitis C, starting with commercial truck drivers
By Sunnivie Brydum
T
he company behind the first rapid at-home HIV test has its sights on fighting another chronic condition that affects millions of Americans and poses an elevated risk for HIVpositive people: hepatitis C. Building on its reputation for creating OraQuick, the fi rst at-home HIV test, OraSure is now distributing the only FDA-approved rapid test for hepatitis C, known as the OraQuick HCV Rapid Test. OraSure has teamed up with drug manufacturer AbbVie to bring its HCV rapid test to pharmacies and clinics around the country—with a $75 million awareness TRUCK DRIVERS campaign that focuses ARE FIVE TIMES on reaching commercial MORE LIKELY TO truck drivers, who are HAVE HEPATITIS C five times more likely to THAN OTHER have hepatitis C than AMERICANS other Americans. The companies partnered with the Healthy Truckers Association of America to create “Truckers Rolling Against Hepatitis C.” The campaign kicked off at the Great American Trucking show in Dallas in August and extended to additional shows and some of the country’s most frequented truck stops. Testing events and promotions are also happening at clinics, retail pharmacies, and driving schools nationwide. ✜ 10
HIV plus
• NOVEMBER /DECEMBER 2014
Scenes from Halloween NOLA
IF YOU GO
Stay…at the newly restored Bourbon Orleans Hotel, a gay-friendly, upscale but affordable hotel, which has often been called the nation’s preeminent haunted hotel. Look for the dancing girl seen in the historic Orleans “Quadroon” Ballroom at various times over the past two centuries. It’s in the heart of the French Quarter, close to all the revelry, between Bourbon Street and St. Louis Cathedral (where you can repent Sunday if you need to). (BourbonOrleans.com) Eat…at Mother’s Restaurant, which is not just the world’s best po’boy eatery, it’s the best of down home N’awlins cooking, just like your grandmother would make. In part that’s because many of the workers at the super gay-friendly, fast-paced (it serves seven days a week, 15 hours a day) landmark (open since 1938) restaurant are relatives of some of the original cooks and servers. Try gumbo, jambalaya, red beans, the Ferdi special, whatever seafood sets you on fire, and definitely don’t miss the bread pudding. (MothersRestaurant.net) Play…pretty much everywhere, but don’t forget New Orleans has some amazing art galleries, museums, and cemeteries to visit too. (NewOrleansOnline.com) —DAM
COURTESY HALLOWEENNEWORLEANS.COM/MOODYPICS (HALLOWEEN)
Two drug companies
st annual Halloween New Orleans, October 23–26, is a weekend-long extravaganza benefiting Project Lazarus, a home in New Orleans for men and women with HIV or AIDS, so that the home may provide health care and support services for their residents. (See HalloweenNewOrleans.com for more info.) Since its inception in 1984 , HNO has raised nearly $5 million for Project Lazarus and has become one of the few volunteer-run events remaining in the U.S. to donate 100 percent of its proceeds to benefit a nonprofit (and it’s the largest gay Halloween charity event in the country). Project Lazarus provides transitional housing for people with HIV or AIDS who would otherwise be homeless. Established in 1985, Project Lazarus has provided medical care and support to over 1,200 people. The services provided by Project Lazarus are not covered by Medicaid, Medicare, or any other insurance, so the organization depends completely on public and private support to continue its mission. But you don’t have to be gay to join the fun. This year’s HNO follows the seductive and riotous journey through a playfully staged fiery underground world with the theme “Descent: Journey Into the Inferno,” based on the 14th-century epic poem by Dante Alighieri. “The event was created to celebrate the gay community in New Orleans, to share love, a sense of family, a unique culture, and a love of showmanship, all while supporting Project Lazarus in its fight against HIV/ AIDS,” says Dustin Woehrmann, HNO executive board chair. In appreciation of HNO’s fundraising, Project Lazarus recently presented Halloween New Orleans the Pawell-Desrosiers Award, the organization’s highest honor. It has been awarded only three other times in the last 30 years. ✜
YOU DESERVE
ANSWERS Diagnosed with HIV and not sure where to start? Download the free HIV Answers App
GET ANSWERS AT
HIVANSWERS.COM
EASY RIDER
By Diane Anderson-Minshall
Katee Sackhoff, the breakout star of television’s Battlestar Galactica and Longmire, didn’t just join a walk or ride to raise money for HIV. She started a whole organization: Acting Outlaws, a sort of charitable biker gang that rolls into town with mufflers blaring to raise money and awareness for issues like HIV stigma and environmental destruction. (Most recently, she and Battlestar’s Tricia Helfer joined the fifth annual Kiehl’s LifeRide for amfAR, a 12-day, 1,500-mile odyssey from Wisconsin to New York City, helping to raise $170,000.) Now she’s ready to talk about her first HIV test, learning her friend was poz, what she has in common with Deputy Sheriff Victoria “Vic” Moretti (her Longmire character), and why the world would be better if a woman ran it. I was sorry to hear about your doggie passing. It’s been the weirdest thing because he was 18 and I’ve been caring for an elderly dog now for about five years. It’s been a good portion of my life—the last few years—of caring for him and now that he’s gone.… I said to my fiancé yesterday, “I feel like my purpose in life is gone.” Like I don’t know what to do with myself, because I’ve been caring for him for so long that I’m just at a complete loss. I wander around the house, I watch TV all day. Normally, my life was by his medicine schedule.
Now everyone’s going to tell you have a baby. It’s funny that you said have a baby because now I’m sitting here calling my fiancé going, “I think we should have a baby.” Right? Like that seems the best, you know, let’s fix one problem and just busy my life with a baby.
I love that you’re not just a philanthropic performer, but you also started a charity organization. Tell me about the impetus behind Acting Outlaws. Acting Outlaws really started because Tricia [Helfer] and I really have always kind of questioned what to do with the soapbox we’re given as actors. She and I had wanted to kind of really marry our love of riding motorcycles with our sort of lifelong ethical [responsibility]. So we decided, well, let’s start a company and let’s make a habit out of doing this on a regular basis. The first reason we came up with was in response to the oil spill in the Gulf of Mexico. My fiancé and her husband are both from New Orleans and we both have family ties to that region, and when the Gulf oil spill happened, it just seemed like something needed to be done. It was about seven months later and people had completely stopped talking about it, and…the problem was far from over. So we kind of decided this is where Acting Outlaws would come in; we come in and raise awareness when awareness stops. Our news cycle is so instantaneous now that by the time one thing happens, five minutes later something else happens and it is just as tragic…and our attention spans are so short that we forget. So 12
HIV plus
• NOVEMBER /DECEMBER 2014
we decided to do a motorcycle ride and raise awareness for that, and then year by year we keep doing different events to raise awareness for organizations or issues that we think need more attention.
The idea of motorcycle fundraising is really fascinating. Yeah, we’ve had it said in so many ways, but none better than our lovely president [and founder of Kiehl’s] Chris Salgardo, who said that the great thing about motorcycles, at least the motorcycles we ride, is that they are so loud that you can’t help but pay attention to them. And it’s such a powerful metaphor when you make so much noise on a motorcycle to raise awareness and keep the attention on an issue that still needs the attention. That’s kind of why the motorcycle is such a powerful thing for us, because it is loud.
Chris just led the fifth annual Kiehl’s LifeRide for amfAR, the 12-day charity motorcycle ride. Did you get to ride the entire route? I did not. Tricia and I met Chris five years ago, on the first ride from Los Angeles to San Francisco, and Tricia I both did that ride and just fell in love with him and who he is as a human being— he’s pretty phenomenal—and so we did that whole ride and over the next five years we both participated in each ride to some extent. But the rides that we love keep getting longer, which is more fun, but it’s hard to keep getting more days off for each ride; you’ve got to call your bosses and say, “I know we’re shooting, but I’m going to take 12 days off.” I was able to do, I think, eight days. But even if it’s just to do one day, we’ve done a portion of all of the rides.
How long have you been riding? I started riding in 2005. I grew up in a small town where four-wheelers were kind of the norm and Tricia grew up on a farm in Alberta, so she was always around motorcycles and heavy machinery. She’s the only supermodel I know who can drive a forklift or some other kind of farm machinery that’s massive. But in 2005 we found out that my boyfriend
grew up with her husband. They both rode, and Tricia and I at that point kind of took it upon ourselves to challenge each other to both get our licenses. And if anyone knows Tricia, you never make a bet with her, because she wins every time. She’s one of the most beautifully competitive people I’ve ever met— it’s one of the things I love about her. So she got her license like a month or two before me, and I was like, Oh, my God, so we’re actually doing this? I kind of thought we were just talking about it. But three months later I had my motorcycle license.
When were you first of aware of HIV? I remember watching the TV movie about Ryan White when I was a kid and not really understanding what it was. I think I was so young, I didn’t understand the magnitude of that story and how it was going to change people’s opinions about the disease. I think my first experience with it was being in the car with my dad, who was driving me to school when I was in fifth or sixth grade and he was listening to the news and we had heard that Magic Johnson had come out and said that he had tested positive. That was a weird moment because it opened up a dialogue between my father and I about so many things you don’t really talk about when you’re in fourth or fifth grade, and it gave the disease a face, because up until that point people didn’t feel like they could identify with the disease.
Absolutely. In 2002 a friend of mine told me that he was HIV-positive, and it was a really interesting conversation because there was so much fear in the announcement and not because of the disease per se, but because of the fear that people wouldn’t love him anymore. It was one of the most interesting conversations I’ve ever had because I couldn’t understand how a person could think that this disease would make them unlovable. And I realized in that moment that not only did I need to convince him that I’d love him until the end my life, but that this disease still had so much fear attached to it and so much stigma that I realized whatever I could do to help raise awareness and funds for this disease that I would do that for as long as I could.
There’s been a rise in HIV among youth. One of the beautiful things about people being young is that you believe that you’re invincible. It’s also one of the biggest drawbacks of youth. For most of my life we’ve been living with the knowledge of HIV and AIDS…and you see people living a full life. I think [kids] are not afraid enough of it anymore. It’s a double-edged sword because you don’t want people to be afraid of this disease, but you want them to take precautions.
JASON MERRITT/GETTY IMAGES FOR HUMANE SOCIETY
What was your first HIV test like? I’ve been tested numerous times. I think as an adult, and as a person who is sexually active, it is your responsibility to get tested as much as you think you need to. If you are promiscuous and don’t use protection, I believe you should be tested as much as possible. It’s your responsibility to your next partner to have the knowledge of your own health. And so I was tested a handful of times in my life, and every time it doesn’t get easier. There’s a time when you go get tested and you start questioning all the decisions that you’ve made in your life up to that point. And you understand if you’re not making smart deciKatee Sackhoff at the Humane Society of the United States’s 60th Anniversary Gala at the Beverly Hilton Hotel, March 29 in Beverly Hills
N O V E M B E R / D E C E M B E R 2 0 1 4 • HIV plus 13
choices in this business. It’s just amazing. The fan base is constantly growing; the crazy thing about Battlestar is that it has only gotten bigger since the show ended, which is a very weird thing. I have kids coming up to me that are 8 years old telling me that they love Starbuck and they love the show. I’m like, “My God, you weren’t even in the womb when we started that series!” It’s just the gift that keeps on giving.
My sister-in-law lives in Wyoming and just absolutely loves you on Longmire, but your fans from Longmire are so different from your fans from Battlestar. Oh, thank her. Yeah, it’s a completely different fan base and that’s great. Battlestar gave me the ability to choose what jobs I wanted to do, and Longmire came along and it was in perfect timing. The one thing that I’d never done was played an age. People really have never known how old I was, so it’s provided me the opportunity to go do a movie like Oculus where I have 14-year-old children and then shoot another movie where I’m playing 27. So people have no idea where I’m at. Then Longmire came and I really wanted to play normal; I’d never played a character who was like me, and so I really kind of jumped at that opportunity. And it did expand the fan base; it is a very, very, very different fan base.
Are you saying the character Vic resonates with you because you have a lot of similarities? Not so much similarities, but I’d always played characters that were incredibly flawed and not just like normal-person flawed, like incredibly flawed and dangerous. I’ve never really played a character that wasn’t toxic. I was really looking forward to playing normal.
What’s been the best part about playing Vic?
Sackhoff joined other TV stars at last year’s pre-Emmy event, Variety & Women in Film sions, you could end up with a sexually transmitted disease. And then you have that waiting period where you start to think, What if? You start to make decisions like, if this is the case, this is what my life will be like, and you start to prepare for the answer…you’re scared of the unknown, you try to get a handle on it. It’s not fun. But it’s something as a sexually active person you have to do. And people don’t. They are so scared to get tested. Some people have that kind of “Well, I’d rather not know.” And that’s all fine and dandy for yourself, but if you’re sleeping with other people, it’s not OK. A lot of people live their lives with their head in the sand.
AMANDA EDWARDS/GETTY IMAGES FOR VARIETY
Fans really still feel connected with you from Battlestar Galactica. How does that legacy feel? You’ve got to check your blessings, you know? I grew up in a small town and dreamed of being an actor, and you dream of it, but you never think it’s actually going to happen. So it’s fantastic. With Battlestar Galactica, people always say, “What a fantastic first job.” I wish that was my first job—that would’ve been fantastic—but I’d been acting for 10 years before that.
Ah, yes, the classic “overnight sensation” in which people have really worked for 15 years in obscurity. [Laughs] Yeah, I’m 34 and I could actually take my pension. I’ve been in this business for a long time, so for me, I never dreamed that a show called Battlestar Galactica was going to give me my career. And not necessarily give me my career, because I’d been working steadily, but give me the career flexibility I got from the show and the ability to have
I like wearing jeans every day. It’s nice to go to work and throw my hair in a ponytail and just kind of walk on set. I do feel like she’s kind of an everywoman. So many people can identify with her and her daily struggles, which seem so normal, and that’s kind of what I like about her.
I was so surprised that it got axed by A&E You know, I’m not surprised. My fiancé is a producer, he’s a movie producer, not a TV producer, but as an actor living with someone like that you’re a fly on the wall and get to learn things. Key demographics in this business are gold, and that key demo is 18-to-25 [year-olds]. Shows are won and lost and bought and sold and movies succeed or fail based on that key demo. And advertisers love the key demo because the key demo in their minds is who spends the money, so when you have a show that skews older.… I understand why a network wouldn’t find that as desirable as a show like Bates Motel that skews younger, because it’s not flashy enough in their minds for investors, for advertisers. So I’m not I’m not shocked at all. It’s the business and it sucks.
I find it baffling since the viewer numbers are good. It sounds like another network may pick it up, but if they don’t, what does that mean for you? The same thing it always means. Longmire only shot for four months out of the year. So for the other months I was unemployed. As an actor, you are only employed if you’re working, so eight months out of the year I was unemployed. So I’m used to going out and finding work. Because of Battlestar, television is a place where I believe as an actor, I will always have a home if I want one. Perhaps not to the level of success that Battlestar and Longmire had—that’s a fingers crossed.
You battled thyroid cancer when you were younger. What did you take away from that experience that you can share with other people?
N O V E M B E R / D E C E M B E R 2 0 1 4 • HIV plus 19
So much. I learned that you have to be your own advocate; that was one of the biggest things that I learned with our health care system. I learned that whenever you are diagnosed with something that scares you to always bring someone with you to doctor’s appointments, because they need to be your memory, because you forget everything that the doctor says. My fiancé was invaluable. Mr. Producer, he would come in with yellow notepads and take extensive notes and then we would have lunch after the appointments and he would read things back that the doctor said, and I didn’t remember anything. As Deputy Vic Moretti on A&E’s Longmire
That’s great advice. The other thing I’ve learned just to stay off the Internet. The Internet is a wealth of information, but at the same time, everything is personal and nobody can speak for you and the circumstances that you are having and your future health and how something is going to affect you, because nobody knows. They can tell you what 40 percent of people felt, but that doesn’t mean it’s going to be you, and so I learned that people use the Internet so many times for negativity because they need to clear their minds and they need to get it off their chest. And when you go and you read it, it terrifies the crap out of you. So I learned to just stay off the Internet because, according to the women on the Internet, I was going to gain 40 pounds and have no energy and have no sex life and I was going to be a shell of myself for the rest my life. And I was terrified. And none of that was true. Also, therapy is invaluable. I had so much guilt about my disease because we’re in the cancer ward and everyone there was sicker than me, and there was so much guilt I had for that and I didn’t know how to handle that. And so I had to talk about it a lot, and it took years to be OK with that because I was convinced that the other shoe was going to drop at some point.
I know that at least one in five women will have cancer in their lifetimes and at least 80 percent of people will develop a chronic or disabling condition in their lifetime, but often they’re invisible. How do we get people to recognize that disability is a part of all of our lives? That’s a very interesting question because I think we actually live in a very selfish society—not necessarily negatively self-absorbed, but a very self-absorbed society. We’re one of the only countries that lives to work, and we work nonstop and we’re constantly moving, constantly trying to obtain because we are kind of programmed to think that this is the life we should want and this is the life that you have to have. So everyone is so driven that nobody takes time to acknowledge the person standing next to them to kind of have the head come out of the sand and the blinders to come off to realize that everyone around you is dealing with something in their life—and that it could happen to you. I think that we don’t stop until something happens to us. It’s such a bigger problem that I don’t know how to change society, and I don’t think anybody does. I think that’s the biggest problem: Nobody really recognizes what they have until they don’t have it anymore, or they don’t recognize the joy of not having something until they have it.
That goes back to what you’re saying earlier. I’m a huge proponent of just honesty, complete, utter honesty, and I think that’s something we don’t necessarily value in the world because I think that we’re so judgmental and we’re so scared of things that are different that people are terrified to be honest. I don’t know how we get people to open their eyes and to want to talk about things that need to be talked about, because people are scared because everybody judges everybody. I don’t know how to change that. I just think it has to start with the children, because I don’t think we can change adults. So hopefully someday we’ll live in a utopia or our children’s children will live in a utopia where everybody’s honest and there’s no judgment and there’s none of the things we deal with now.
Well, I do think, [it’d be better] if we had a woman running things. [Laughs] Sometimes my girlfriends and I joke about it, that if the world was run by a woman that things would be totally different. We would probably all cycle together, which would be really bad, but otherwise I think that there’s an honesty that women have—this desire and need to just talk that I think sometimes needs to be more the norm. ✜
20
HIV plus
• NOVEMBER /DECEMBER 2014
JAMES MINCHIN
Don’t worry, I didn’t expect you to solve all the world’s public policy issues today.
JOIN GMHC FOR
A PRIVATE COCKTAIL EVENT BENEFITTING GMHC’S MEALS, NUTRITION AND KEITH HARING FOOD PANTRY PROGRAMS
THURSDAY, NOVEMBER 6, 2014
7 PM Ph-D ROOFTOP LOUNGE, DREAM HOTEL–DOWNTOWN NYC DJ Kevin Graves, Open Bar, Dancing, Raffle Prizes, and more! Go to gmhc.org/thanksandgiving for more information. THE OFFICIAL AIRLINE OF GMHC
NATIONAL MEDIA SPONSOR
WORLD AIDS DAY 2014 It was a year of highs (a baby was cured!) and lows (turns ou t the “cure” didn’t last) in the world of HIV and AIDS treatment, res earch, policy, and headlines. Here are a few high (and low) lights. n De La Cruz, Michelle Garcia, By Diane Anderson-Minshall, Lyn s, Trudy Ring, Connie Wu Katie Peoples, Daniel Reynold BIG CHANGES FROM GOVERNMENT Both the Centers for Disease Control and Prevention and the World Health Organization came out in support of PrEP, or pre-exposure prophylaxis, for sexually active gay men as an HIV prevention measure. The United Nations Joint Programme on AIDS predicted it will be possible to end the AIDS epidemic in urban areas by 2030, and leaders of major cities around the world pledged to help make this happen. New York State is being even more ambitious; Gov. Andrew Cuomo announced an initiatives to end AIDS by 2020.
ORGANIZATIONS TOOK CHARGE
22
HIV plus
• NOVEMBER /DECEMBER 2014
Is a cure for HIV “the moon shot of our generation?” Meanwhile GMHC, with support of the doctors on its board— Frank Spinelli (see page 35) and Demetre Daskalakis, New York City’s new chief of HIV prevention—held a series of town hall meetings in the city and on Fire Island to educate people on the use of PrEP and to advocate for its use among sexually active young gay and bi men.
NASA/AFP/GETTY IMAGES
Kevin Robert Frost, CEO of amfAR, the Foundation for AIDS Research says there’s never been a more optimistic time in research to cure or prevent HIV. That’s why amfAR committed to investing $100 million over the next six years to find a broadly applicable cure by 2020, dubbed the Countdown to a Cure campaign. “This is the moon shot of our generation,” said Frost, comparing the goal of a cure by the end of this decade to President Kennedy’s promise to put a man on the moon before the close of the 1960s, a promise that was indeed realized.
ONE IS STILL THE LONELIEST NUMBER Timothy Ray Brown, the Great Berlin Hope, has stayed HIV-free for several years following a bone marrow transplant, but he remains the only person thought to be technically “cured” of HIV. The Mississippi child reportedly cured of HIV with antiretrovirals and the two Boston men who were HIV-free after stem-cell transplants have all seen a resurgence of the virus.
GIRL POWER SOLVES A MYSTERY What makes a HIV breakthrough even better? When the discovery is based on the science project of a 13-year-old girl. Elan Filler spent a summer gathering soil and tree samples from areas around Los Angeles and helped researchers pinpoint the environmental source of fungal infections that have sickened people with HIV or AIDS in Southern California for decades. The study, which appeared in PLOS Pathogens, found strong genetic evidence that three tree species—Canary Island pine, Pohutukawa, and American sweetgum—can serve as environmental hosts and sources of Cryptococcus, which encompasses a number of species including C. gattii and causes life-threatening infections of the lungs and brain that are responsible for one third of all AIDS-related deaths.
A KILLER CONDOM & A NEW TAMPON A gel-coated condom with the ability to kill off 99.9 percent of viruses—including HIV and HPV—is hitting store shelves in Australia. A joint venture between Starpharma, the Aussie pharma company that developed VivaGel (a vaginal microbicide), and Ansell (a global protection firm), the LifeStyles Dual Protect VivaGel condom is the world’s only condom offering barrier protection and a proprietary antiviral compound in the lubricant. No word on when, or if, it will come to the States. A new tampon-like device (but not an actual tampon), developed by a team of bioengineers at the University of Washington, uses fibers that dissolve almost immediately after contacting moisture to deliver a high dose of the anti-HIV drug Selzentry (maraviroc), which could serve to prevent HIV infection. The tampon, still 10 years away from market, could be inserted into the vagina using fingers or an applicator. A vaginal ring delivering a combo of maraviroc and Truvada has shown promise but is still in trials, as is Selzentry as PrEP (if it works as effectively as Truvada, it’s likely to push the latter drug aside because it would lower concerns about resistance).
PHILIPPE LOPEZ/AFP/GETTY IMAGES
MEDS IN THE NEWS Istodax (generic: romidepsin) successfully “kicked” HIV out of reservoirs in patients in a recent study. Bionor Pharma’s strategy involves using Istodax, an HDAC inhibitor, to “kick” the virus out of reservoirs, making the HIV-infected cells visible to the immune system; the immune response generated by its therapeutic vaccine, Vacc-4x, is then expected to attack and eliminate the infected cells. Conventional HIV medication has failed to address the virus in reservoirs and sanctuary regions, which has been an obstacle to an HIV cure. The first phase of the study established the optimal dose of Istodax; the second phase will include vaccination with Vacc-4x followed by treatment with Istodax once a week for three weeks, then an interruption of antiretroviral therapy for 18 weeks to see if the immune system continues to suppress the viral load.
Tivicay suppresses HIV even in those who are drug-resistant. In a new study, the recently approved HIV integrase inhibitor demonstrated high rates of viral suppression among people who are resistant to other HIV antiretroviral drugs, with no resistance detected during the 96 weeks of follow-up. Triumeq (a combination of Tivicay and Epzicom) became the newest single-pill HIV treatment. ViiV Healthcare’s first dolutegravir-based fi xed-dose combination pill, Triumeq is the first single-pill regimen that combines the integrase strand transfer inhibitor Tivicay (generic name: dolutegravir) with the nucleoside reverse transcriptase inhibitor Epzicom (a combo of abacavir and lamivudine). Janssen and ViiV Healthcare announced they are developing a new single-tablet regimen containing Janssen’s Edurant (the nonnucleoside reverse transcriptase inhibitor rilpivirine) and ViiV’s Tivicay (the integrase inhibitor dolutegravir). If the new pill is successfully developed and approved by the Food and Drug Administration, the companies say it could offer people living with HIV who are virologically suppressed an option to switch from a standard three-drug therapy to a two-drug regimen without a nucleoside reverse transcriptase inhibitor.
A new condom kills 99.9% of all viruses HIV patients receiving alpha interferon may go into long-term remission after initial highly active antiretroviral therapy is discontinued, according to a study by the Wistar Institute at the University of Pennsylvania. Alpha interferon resulted in control of HIV replication in 45 percent of study participants even after they stopped antiretroviral therapy. Decreased levels of latent HIV also occurred in patients in which HIV replication was suppressed by antiretroviral drugs, supporting a role for immune-mediated approaches in HIV suppression and the potential eradication of latent virus that is required for a cure. Based on the study, Hemispherx Biopharma teamed with a South African biotech firm to seek approval from the South African government to do a broader study on Alferon N, the only FDA-approved natural interferon, in the suppression of HIV replication and the reduction or elimination of latent HIV. NOVEMBER /DECEMBER 2014 •
HIV plus
23
is less quickly broken down by the body as similar existing drugs.” The research confirms the initial findings of a Japanese soy sauce company, which accidentally discovered the molecule in 2001, and Merck is currently at work to develop a treatment using it. Cure Status: Long way off.
IN THE LABS Scientists believe they can identify which viruses cause infection, something that could lead to drugs that target more virulent strains. While there are many different strains of HIV, 76 percent of all infections arise from a single virus. Researchers at the University of Michigan have been able to identify that virus using a key protein, according to a study published by Nature Nanotechnology. Researcher Wei Cheng of the U-M College of Pharmacy believes the study is the first in which researchers were able to capture HIV at the single-particle level, so if it differed by even one molecule, their instruments could detect the difference. Researchers found that the virus particles have different quantities of a key protein that enables virulence, and the protein-rich virus particles were more infectious than the others. A family of proteins that promotes virus entry into cells also has the ability to block the release of HIV, according to research out of the University of Missouri published in the Proceedings of the National Academy of Sciences. One type of cellular protein (T cell immunoglobulin and mucin domain) has previously been shown to promote entry of some highly pathogenic viruses into host cells. Now the MU researchers have found that the same protein possesses a unique ability to block the release of HIV-1 and the Ebola virus. This knowledge may help scientists develop ways to slow production of these viruses.
THE QUEST FOR A CURE CONTINUES According to headlines, everything seemed to hold “the key to a cure” this year from soy sauce (promising) to ozone (pure quackery). Among the interesting ones this year: The Cure: Soy sauce. The Facts: Researchers at the University of Missouri have confirmed that a flavor-enhancing molecule in the popular condiment, EFdA, may also be used to develop HIV-fighting compounds, and the medicine could be 70 times more powerful than tenofovir (Viread), a leading HIV drug therapy. “Patients who are treated for HIV infections with tenofovir eventually develop resistance to the drugs that prevents an effective or successful defense against the virus,” said Stefan Sarafianos, an associate professor at the University of Missouri School of Medicine. “EFdA, the molecule we are studying, is less likely to cause resistance in HIV patients because it is more readily activated and 24
HIV plus
• NOVEMBER /DECEMBER 2014
BLOCKING A VIRUS Population Council researchers announced in PLOS One that they had developed a safe, stable microbicide gel that can prevent the transmission of HIV, human papillomavirus, and herpes simplex virus 2 in both the vagina and rectum. The USAID-funded animal study also provides the first data that the gel is effective against multiple strains of HIV and can maintain its strength in the vagina against all three viruses for at least eight hours prior to exposure. A Phase I safety trial of the gel began enrolling participants in May. The gel, known as MZC, contains two potent antiviral agents, MIV-150 and zinc acetate, and because it targets multiple viruses, it may be more effective at stopping HIV transmission than those that target HIV alone. It’s a long way from market, but researchers from the University of Texas, in collaboration with Humberto Lara Villegas, a specialist in nanoparticles and virology from the University of Monterrey, Mexico, have created a new vaginal cream that prevents HIV transmission using silver nanoparticles to block the virus from entering CD4 immune cells. Science Daily reported that the vaginal cream “has been tested in samples of human tissue and has proven the efficiency of silver nanoparticles to avoid the transmission of the virus through cervical mucous membrane.” The cream takes less than a minute to begin working and can last up to 72 hours, and because of the unusual blocking process, it would provide protection for both the woman and her partner, regardless of who might be carrying HIV. The cream will next go into testing on mice that accept human cells.
DAVID BRENNAN
A cartoon showing a single HIV-1 particle being captured by an optical trap delineated by the white lines and red shadows
The Cure: Tobacco. The Facts: Researchers from the University of Louisville got a five-year, $14.7 million grant from the National Institutes of Health to develop a gel made with tobacco plants injected with a protein that prevents the spread of HIV infection. The research team will work with a protein called Griffithsin (GRFT), a carbohydrate combining protein that is found in red algae. In laboratory studies, GRFT has been shown to act against HIV. The algae-based product surrounds the sugars around HIV cells and prevents those cells from getting in contact with uninfected cells. Kenneth Palmer, Ph.D., director of the Owensboro Cancer Research Program at the University of Louisville, is leading the team of researchers who will work toward developing a gel with those components that can be used during sex. Researchers will inject a copy of the protein into a tobacco mosaic virus that will carry the protein into the tobacco leaves. Then the leaves will be harvested after 12 days to extract the mass-produced protein to develop it into the vaccine gel. “Our goal is to optimize the delivery system of the protective agent, which in this case is a gel, and determine its safety and estimates of its efficacy, leading to a firstin-humans clinical trial,” Palmer said. Researchers from several other universities and biomed firms are involved. Cure Status: Long way off.
Joep Lange Geraniums (technically extracts of the geranium plant Pelargonium sidoides) block HIV from entering human cells, according to scientists from Germany. Research reported in PLOS One showed these extracts protect blood and immune cells from HIV-1 infection by blocking attachment of virus particles to host cells and thus effectively preventing the virus from invading cells. In Germany, Pelargonium sidoides extracts are licensed as a herbal medicine to treat respiratory infections. Scientists say the extracts could be developed into an anti-HIV treatment perfect for resource-limited settings, since they are easy to produce and do not require refrigeration.
WE’RE STARTING TO WIN IN THE COURTS Lambda Legal, the Sero Project, and dozens of anticriminalization activists who gathered at the groundbreaking HIV is Not a Crime conference in June at Grinnell College celebrated the nation’s first win: In a pivotal appeal litigated by Lambda Legal, the Iowa Supreme Court set aside the conviction of Nick Rhoades, an HIV-positive Iowan who was initially sentenced to 25 years in prison, with required registration as a sex offender, after a single sexual encounter with another man during which they used a condom. In reversing the conviction, the court questioned whether HIV-positive individuals who have a reduced viral load as a result of effective treatment could transmit HIV through sexual activity. The state has now changed its archaic HIV criminalization law, and the Department of Justice advised states to eliminate such prosecutions absent clear evidence of intent to harm and a significant risk of actual transmission; the DOJ had analyzed such laws in collaboration with the Centers for Disease Control and Prevention. “This is a watershed moment in the fight to decriminalize HIV. When the country’s leading law enforcement agency—working hand in hand with the country’s leading public health authority—reaches the conclusion that particular laws and criminal prosecutions are working at cross purposes to our national strategy for ending the HIV/AIDS epidemic, it is time for those with the power to end these prosecutions to take immediate action,” said Scott Schoettes, HIV project director for Lambda Legal and a new appointee to the Presidential Advisory Council on HIV/AIDS.
JEAN AYISSI/AFP/GETTY IMAGES
WE’RE WINNING THE FIGHT AGAINST AIDS, SORT OF
THOSE WE LOST
Remembering HIV activists and researchers who died
By Trudy Ring This year saw the loss of several scientists and activists in the fight against HIV and AIDS, most of them in the crash of Malaysia Airlines Flight 17 in July. That flight carried six delegates bound for the 20th International AIDS Conference in Melbourne, Australia. They were:
Joep Lange, executive scientific director of the Amsterdam Institute for Global Health and Development, professor at the Academic Medical Centre at the University of Amsterdam, former president of the International AIDS Society, and founder of PharmAccess; worked to improve access to antiretroviral drugs in poor countries Jacqueline van Tongeren, director of communications for the Amsterdam Institute for Global Health and Development and board member for Art AIDS; partner of Joep Lange Pim de Kuijer, lobbyist for Stop AIDS Now, Amsterdam-based organization fighting the disease in developing countries Lucie van Mens, director of program development and support for the Female Health Co., maker of the only female-controlled condom approved by the Food and Drug Administration and World Health Organization Martine de Schutter, program manager at Bridging the Gaps, a group dedicated to improving access to HIV prevention, treatment, and other services for vulnerable populations around the world Glenn Raymond Thomas, media officer for the World Health Organization; in charge of publicizing WHO’s latest report on HIV
OTHERS LOST THIS YEAR John Fahey, MD, a cofounder and key member of the AIDS Institute at the University of California, Los Angeles, who died in August; a professor emeritus at UCLA’s David Geffen School of Medicine, he also helped establish the Multicenter AIDS Cohort Study and expand AIDS research in developing countries, especially India
St. Paul’s Hospital in Vancouver, Canada, shut down its dedicated AIDS ward, open since 1997, because it no longer has enough patients. In 1997, one person died of AIDS complications every day there, but improvements in treatment and St. Paul’s innovative programs have reduced AIDS-related deaths by 80 percent since then.
Sheik Humarr Khan, the doctor leading Sierra Leone’s response to the Ebola virus outbreak, who died of complications of Ebola in July; was also medical officer for AIDS Healthcare Foundation’s Sierra Leone Country Program and from 2005 to 2010 was in charge of HIV and AIDS services at Kanema Government Hospital in that nation
BUT STILL LOSING IN THE MEDIA
Li Hu, a Chinese activist who died of AIDS complications in August; fought for services for HIV-positive people in a nation where they are often denied medical treatment; founded a support group and advised the China Alliance of People Living With HIV and AIDS
Several men (and the occasional woman) were arrested and tried for intentionally spreading HIV, the majority of whom did not transmit HIV and many who either wore a condom or have an undetectable viral load and therefore little chance of transmitting HIV. But their names and accusations about their status and behavior were published in local papers. In one example, college wrestling star Michael Johnson’s story went viral after a guy he had sex with called the cops. Read Steven Thrasher’s article in BuzzFeed for an analysis of how the intersection of race, criminal justice, and AIDS hysteria work in this case, which is ongoing. ✜
Oliver Wendel Martin III, board president for the United Church of Christ’s HIV and AIDS Network, who died in April; had also been founder and CEO of Conscious Contact of New York, administrative chair of NYC Faith in Action Coalition for HIV and AIDS, and national administrative leader of National Faith in Action for HIV and AIDS NOVEMBER /DECEMBER 2014 •
HIV plus
25
Matt Bomer continued from page 16
Check Out New HIV Plus Video Stars A
JOSH: KRIS TALEE
“never avoided gay roles on my own volition. I would go on auditions. And and available. At the time I had been living on my own—trying to create his if I ever passed on something, it was because it wasn’t a role I related to; physical reality for myself—for about a month. So I tried to just bring all of that it certainly wasn’t because the character was gay.” He says the roles just to the work and then just get out of my own way and respond to this amazing didn’t come to him, perhaps that’s Hollywood’s way of keeping the glass actor they’d hired to play this man on the subway. Felix is someone who was closet intact. Though he’s been out in his private life for many years, he appreciated aesthetically for the majority of his life, and you know when I first blogger behind ImStillJosh.com, Josh Robbins aron Matthew Laxton (bottom right): didn’t officially come out as a gay man in Hollywood until 2012, when he came onto the subway, a girl stared at me, and I remember pulling my hat over has worked with HIV Plus to broadcast news One of our 20 Amazing HIV-Positive Gay Men thanked his husband, publicist Simon Halls, and their three sons—Kit, the lesion. Ryan was so present and available as a director that he saw that and about the latest treatments, breakthroughs, sta- an award for his HIV charity work ofhe2014, activist Aaron Matthew Laxton, made Henry, and Walker—while accepting made sure that we covered that in the scene. We did a bunch of different tistics, and controversies. He’s also interviewed last issue’s list for breaking new ground in social from the Desert AIDS Project. takes on that and played with a lot of different emotions in response to Felix’s The 36-year-old of USA’s White Collar told Out magazine recently, glimpse His into the future, and the rest was really“My up toHIV the editors.” fellow HIV activists such as Tylerstar Curry and Jack media. popular YouTube series, felt a responsibility Simon and to our kids to be able to live with His transformation wasn’t complete until the second of filming. in“Ilonger Mackenroth, form video tointerviews. Journey,” has given viewers an intimate look at round integrity and not have after some strange Production was halted for several weeks so Bomer could transform himself Robbins launched his blog shortly receiv- split psychology of ‘This is who my life as an HIV-positive man, providing viewers dad is at home, and this is who he is to the public.’ That trumped any type into Felix toward the end of the film, as the man is dying of AIDS complicaing his positive diagnosis, as a means of educattheir first insight into many HIV 101 issues. Now of professional repercussions that it could have had.… Whatever happens tions. He lost 40 pounds (partly by doing a two-week cleanse at We Care Spa ing others. “I decided to make a blog because my we’re bringing that series to HIVPlusMag.com from this point on says a lot more about the business and society than it in Desert Hot Springs, Calif., in which he only ingested alkalized water, juice, circumstance of being newly beginning Oct. 1. Tune in as Laxton chronicles does about me.” poz isn’t my death tea, and enzymes). He went to live on his own for a month, in part because he sentence, it isn’t even close to what defiabout nes me as his experiences dealing with HIV. He helps all The same could be said performers who are out about being HIVdidn’t want his kids to see him wasting away. Josh,” he wrote. “And I want guys my age to mayof us, poz or not, discover what it means to positive. When will an actor of his stature who is living with HIV feel safe “I felt a tremendous responsibility in playing this role, and part of it was enough to come out? “Gosh, that’s a really interesting question,” Bomer creating that physical reality“HIV for thedoes secondnot halfstop of theme film,” he admits. was of be find“It a piece hope through my experiences.” be HIV-positive today. says, pausing in thought. you know, it’s hard to say. I would like to sort ofdoing one month of casual Laxton weight loss and in then months ofUltimately, really aggres-he hopes his voice will lead“And to others from anything,” says a two recent believe that tolerance and acceptance has profoundly changed in the past sive weight loss, and that’s when I left my family, toward the end of the second “realizing it’s only the beginning on a new world YouTube video, dubbed “Update on Life.” “And decade for sure, so hopefully soon. I mean, I can speculate, but I would month, and then just lived on my own in New York and really tried to focus on for you.” And, heck, it’s news in a minute, surely hopefully you are in a situation where you are really just be theorizing and I’m probably too ignorant to be doing that. really solely what Felix was going through. I obviously consulted someone and you canatfithat nd time that! it is [that does come out as poz] and whenever it is, if I am still not havingour issues you’re allowButfor whoever I prepared kids aswith best IHIV could,or but I felt it not was best for me to be away Go to HIVPlusMag.com for thebeside videos ing HIV to stigmatize you or bring you down.” around, I will stand there them and give them a standing ovation point in time until I sort of finished the project and could start eating again.” from these HIV-positive YouTube gurus. and thank them, that’s for sure.” ✜ Though this is his first big gay role, and a doozy at that, he says he’s
J
osh Robbins: Want a weekly 60-second update on the latest HIV news? Check out our other video series, HIV Plus Video Minute With Josh Robbins. Since early 2014, the popular
You can also get recaps in our weekly email newsletter (HIVPlusMag.com/SignUp) or get bimonthly issues of the digital edition FREE, atj u ly/a u g u s t 2 0 1 4 HIVPlusMag.com/Subscribe. ✜
•
hiv plus
23
30
HIV plus
• NOVEMBER /DECEMBER 2014
DUANE CRAMER
n the early days of the AIDS crisis, the collective desperation to curb new infections led to confusion over which practices were high-risk, even among HIV activists and the medical professionals working to fight the virus. Once it became clear that HIV and AIDS were not “gay-only” diseases, prevention efforts targeted dangerous behavior rather than people. But people of one sexual orientation are still fighting a powerful stigma that has persisted for more than 30 years.
“I have had women suggest that because I am bisexual, I spread HIV,” says Khafre Kujichagulia Abif, a 48-year-old married bisexual man, writer, and Atlanta-based AIDS activist who is HIV-positive. The theory is so pervasive that many bisexual activists can’t even recall the first time they heard it: Bisexual men are responsible for infecting their female partners with HIV. In essence, the theory argues, men who have sex with men and women must have a higher likelihood of contracting HIV, and because they have sex with women, they are more likely to infect heterosexual women, who would otherwise be unlikely to come into contact with the virus. But according to the scientist who recently completed the fi rst comprehensive review of scientific literature around the prevalence of HIV among men who have sex with men (MSM) compared to men who have sex with men and women (MSMW),
there certainly isn’t enough information about bisexual men to make such a claim. M. Reuel Friedman, Ph.D., MPH, confirms that bisexual men can acquire HIV from and transmit it to both men and women, whether those partners are bisexual, gay, or straight. But that doesn’t mean that bisexual men are any more likely to transmit the virus than any other group, he says. The truth is more nuanced. In a comprehensive report published in January by Friedman and his colleagues at the University of Pittsburgh’s Graduate School of Public Health and Pitt’s Center for LGBT Research, Friedman set out to determine the number of HIV-positive men who behave in a bisexual manner (meaning they have sex with men and women, regardless of how they self-identify). Then his team determined how HIV prevalence differs in bisexual men versus gay men. The report was the first of its kind to analyze existing research about HIV-positive bisexual and gay men. “Our meta-analysis shows that bisexually behaving men are significantly more likely than heterosexually behaving men to have HIV but significantly less likely than gay-behaving men to have HIV,” Friedman tells HIV Plus. But if bisexuals don’t have a higher prevalence of HIV than other minority groups, why does the belief persist that they are the so-called bridge to infecting heterosexual women? Friedman says the answer to that question is multifaceted. Partially, the perception has gained traction because it’s hard to obtain accurate information about the incidence (new diagnoses) and prevalence (proportion of cases overall) of HIV in people who are bisexual, since national reporting standards only distinguish gay men and straight men, simply lumping bisexual men in with the gay men. He estimates there are 121,800 HIV-positive men in the U.S. who are bisexually behaving, That’s similar, he notes, to the number of heterosexual men and male injection drug users who are living with HIV and AIDS, according to estimates by the Centers for Disease Control and Prevention. Similarly, most studies don’t distinguish women who have sex with bisexual men from women who only have sex with straight men, so it’s tough to trace the origins of new HIV infections in women who have sex with men. There simply isn’t enough accurate data to determine the source of these new infections. Nevertheless, because there are fewer bisexual men than heterosexual ones, and the total number (not the percentage) with HIV in each population is roughly equal, Friedman says that women who have sex with men are about as likely to encounter a heterosexual HIV-positive man as they are to encounter a bisexual HIV-positive man. What’s more pivotal in publicizing the “overstated” connection between bisexual men and HIV, Friedman says, is the tendency of media to boil down complex issues to simplified stories that have a clear, identifiable villain—even if that results in an inaccurate portrayal.
NOVEMBER /DECEMBER 2014 •
HIV plus
31
City] last year,” the Post reported in its brief on a study from the city’s health department. But that conclusion isn’t supported by the data, since it completely ignores the reality that HIV transmission can occur between heterosexual men and women, Friedman notes. “Unfortunately, heterosexual men can and do acquire HIV from heterosexual sex, and they can and do transmit it to heterosexual women,” says Friedman. “Heterosexual men can also
32
HIV plus
• NOVEMBER /DECEMBER 2014
acquire HIV through other means, such as injection drug use, and then transmit it sexually to female partners.” “By ignoring HIV transmission in completely heterosexual people, media accounts have tended to blame bisexual men for all sexually acquired HIV among women,” says Friedman, pointing to the Post article as just one example. “The whole ‘down low’ media phenomenon that occurred in the early 2000s is also an example of that, and it really wound up demonizing black male sexuality— in particular black male bisexuality.” Indeed, lurid reports about the “down low” lifestyle chronicle a supposed subculture of African-American men who are secretive about their same-sex encounters, allegedly “bringing home” their undisclosed HIV infection to their female partners and spouses. But Dr. Herukhuti, 41, a Brooklyn-based cultural studies scholar, sexologist, and educator who identifies as a polysexual black cisgender* man, says the focus on demonizing black sexuality, in particular, has deeper roots than simple misunderstanding. “This is a sexist and racist assumption,” Herukhuti writes of the “down low” narrative in his book Conjuring Black Funk: Notes on Culture, Sexuality, and Spirituality. “It disempowers Black women sexually, intellectually, and morally as well as demonizes Black men, while ignoring the systemic and structural forces at work in a racist, sexist, heterosexist, erotophobic, and classist society that places Black women and Black men at greater risk of poverty, death, and disease.” Herukhuti also warns about the implications of a culture blaming new HIV infections on already marginalized groups, be they African-Americans, bisexual people, or both. “The impact of the [bisexual bridge] myth is women having misinformation about HIV transmission, bisexuality, and gender that put them at greater risk for exposure to HIV,” Herukhuti tells HIV Plus. “It also imposes artificial limitations on women who are seeking viable male partners—making the effort to find love, intimacy, and commitment with someone that much more difficult.” Friedman agrees, noting that decades of unchallenged assumptions about the behavior of bisexual people—especially bisexual men of color—has created a complicated, multilayered closet that makes being honest about one’s HIV status or sexual orientation difficult. “I think that the context in which bisexual men are discussed in mainstream media has been confined largely to HIV bridging since the advent of the epidemic,” he explains. “So that’s 30 years of this undercurrent that bisexual men are responsible for HIV in women, without other competing social narratives. In my opinion, that meme is very damaging to the self-esteem of bisexual men, but that has not been studied, so we have no scientific support for that statement.” But bisexual men, both negative and positive, tell HIV Plus that the stigmas surrounding their identities do indeed take a toll on their well-being.
JOEL PERRY
“The general storyline of bisexual bridging has been a popular one in media accounts that favor simple narratives that play on fear,” says Friedman. “Whether it is fear of gay people, fear of bisexual people, fear of black people, and/or fear of HIV not being a purely ‘gay’ disease. Mass media, and even scientific literature, has not always reported in an unbiased way on bisexual people; then, when you bring in a sexually transmitted infection that is almost always fatal if untreated, and a highly disproportionate infection rate among African-Americans, you have a sort of jet fuel for incendiary press.” A recent report in the New York Post adopted this line of thinking, claiming that three-quarters of women reporting new HIV infections contracted the virus from bisexual men. “Women who had unprotected sex with bisexual partners accounted for most of the new female HIV cases in [New York
Herukhuti agrees that the way to combat intertwining stigmas is through education and honesty. “I think it is important to the process of addressing prejudice against bisexual men and debunking myths, like the bisexual HIV myth, that people learn about more bisexual men—our stories, lives, and experiences.” Similarly, Abif, the bisexual, HIV-positive activist, writer, and nonprofit manager, says combating stigma begins at home. “The first step in protecting myself and protecting others from transmission is accepting who I am and the behavior I engage in,”
“The result is that all bi men are stereotyped and discriminated against,” with bisexual men who are married to women bearing “the brunt of this stigma. This effectively divides the queer male community,” says Ron Suresha, a 56-year-old writer, editor, and cofounder of Bear Bones Books who identifies as a cisgender bear who is gay, bi, and queer. “I’d like to point out that a significant portion of bisexual men are, like myself, in long-term, safe-only, primary relationships with men, with relatively infrequent sexual contact with women. We think of bi men as only being married men cheating on their wives, but there are actually many kinds of bi guys around. This is just one of the common misperceptions of bi men as vectors of HIV transmission to women.” “Even though HIV transmission among IV drug users poses a significant challenge, the point of HIV transmission being sexbased often was shunned with the insulting abstinence mantra,” explains Paul Nocera, a 53-year-old bisexual queer man who serves as the lead facilitator of BiRequest, a social and discussion group for bisexual people and their friends and allies based in New York City. “Bisexuals are seen, likewise, as unable to keep it zipped up. Our supposed constant desire was what was getting us into trouble, and as proof, there was the imagined pathway, with the imagined spike in sex diseases. The weave of stigma is a tight one.” Nocera argues that as a result of that stigmatizing stance, “We’ve wasted precious hours chasing and chastising when we could be doing better science and more effective interventions on all levels.”
he says of being open about his bisexuality and his HIV status. “There is no disconnect between who I say I am and what I do sexually. The stigma surrounding HIV and bisexuality come from a place of lack of knowledge, and understanding. Not enough people have open and honest discussions about HIV and sexuality. Far too many people have sexual partners with whom they have never had a conversation about HIV, STIs, and their own sexuality. Too many men never really share with their female partner all of what turns them on.” ✜ * Cisgender is a term used to describe those who are not transgender; people whose gender identity corresponds with the sex they were assigned at birth.
NOVEMBER /DECEMBER 2014 •
HIV plus
33
From her 1973 hit “The Morning After” to Airplane!’s guitar-toting nun to her 4 Girls 4 Broadway revue, Maureen McGovern has become an entertainment superstar. But it’s her philanthropic work regarding HIV and AIDS she’s most proud of By Trudy Ring
34
HIV plus
• NOVEMBER /DECEMBER 2014
DEBORAH FEINGOLD
F
orty-one years after assuring us there would be a morning after, Maureen McGovern is still spreading a message of hope, not only with her music but her life. The singer and actress has been helping raise funds for the fight against HIV and AIDS since the 1980s, an effort she continued in a recent appearance at the 20th annual edition of Help Is on the Way, a star-studded gala concert for the Richmond/Ermet AIDS Foundation in San Francisco. “We’ve all lost so many dear friends to the disease,” McGovern says on the phone from her country home in central Ohio. “I’m in this fight to the end.” She was thrust into the thick of the epidemic in 1980s New York, having come to the city in 1981 to appear on Broadway in The Pirates of Penzance. “So many friends were dying of AIDS,” she recalls. “In the ’80s in New York, you hated to pick up The New York Times. I’ve never forgotten that. We lost so many brilliant minds in the arts.” McGovern did her first AIDS benefit in 1985, and since then she’s worked with organizations including Broadway Cares/Equity Fights AIDS, Project Angel Food, the AIDS Memorial Quilt, and the Desert AIDS Project, which in 1998 honored her with its Steve Chase Humanitarian Award. “It is a cause that is near and dear to my heart,” she says of her work in this arena. She’s been part of Help Is on the Way at least four or five times, she notes, performing the event’s theme song, “Help Is on the Way,” with its composer, David Friedman, as well as show tunes and standards. The nature of the epidemic has changed over the years, as people with HIV, at least those with access to medications, now have a normal life expectancy, but there’s still a crucial need for services, McGovern emphasizes. The funds raised and distributed by Richmond/Ermet go to agencies providing a variety of important services, such as testing, counseling, legal referrals, employment assistance, and help in accessing benefits, plus research toward a cure. “I see and hope for a cure in the near future,” McGovern says. “Hope is half the battle in any chronic disease.” McGovern’s charitable efforts aren’t limited to HIV and AIDS; she has also done extensive work with the Muscular Dystrophy Association and served as an artist spokesperson for the American Music Therapy Association. “I’ve always believed in the power of music to aid in the healing process,” she says. In keeping with that, she’s begun recording an album of spiritually oriented music, titled How Can I Keep From Singing. Among its tracks will be “Turn! Turn! Turn!” which Pete Seeger adapted from a Bible passage. “Pete Seeger was a hero of mine,” McGovern says. Another new project is a concert program called Sing, My Sisters, Sing, a tribute to women singer-songwriters from the 1960s through the 1990s, such as Carole King, Joni Mitchell, Carly Simon, Janis Ian, Laura Nyro, Annie Lennox, and Mary Chapin Carpenter, with a nod to earlier artists like jazz stars Ella Fitzgerald, Billie
Holiday, and Annie Ross. She premiered it in the fall in upstate New York, and she hopes to book other performances and plans to make a recording of it as well. Also, several times a year, she performs in 4 Girls 4, a musical revue where she joins three other leading ladies of Broadway— Donna McKechnie, Andrea McArdle, and Faith Prince. With her extensive concert and recording résumé, plus Broadway credits that include Nine, The Threepenny Opera, and Little Women in addition to Pirates, McGovern has amassed an impressive body of work since she was the “disaster movie theme queen” in the 1970s—a period she capped off by appearing as a guitar-toting nun in the disaster-film spoof Airplane! and its sequel. But she recognizes that many people will always associate her with “The Morning After,” the theme from The Poseidon Adventure and a number 1 hit in 1973. “I still get letters from people saying that ‘The Morning After’ is a song that has helped them,” she says. “That’s the greatest gift that comes back.” So she’ll keep on offering hope through her music and activism. “I will always work in music and healing,” she says. “I think that’s what I was put here to do. I feel very blessed to be doing what I do.” ✜
Frankly, He Gives a Damn By Diane Anderson-Minshall
Doctor Frank Spinelli
has been treating people with HIV or AIDS in New York’s Chelsea neighborhood for about 15 years and is one of the leading HIV specialist physicians, a published author (his memoir, Pee-Shy, came out last year), and a board member for GMHC, one of the country’s largest organizations working in HIV treatment, prevention, and care. As part of a collaboration between Advocate.com and HIV Plus, he sat down to talk about the escalating HIV rates, PrEP, condoms, and why gay men need to talk more about being on bottom. (The full interview will appear on Advocate.com in October.) A lot has changed since you started, but what hasn’t changed? Unfortunately, what hasn’t changed is the number of new cases of HIV. We’ve still been consistently at 50,000 new cases each year in the United States despite all the education, all the knowledge, all the information, all the history. At the same time, we know that over half, 57 percent, of gay and bi men reported having anal sex without a condom at least once in the past year. There are two subsets that I think fit into this category. One is younger men who have sex with men, and the other is older men who have sex with men—and I would say that’s older than 50 and younger than 30. I don’t think the younger men have a really clear frame of reference of what AIDS was like 30 years ago. And, secondly, it’s not an imminently fatal disease anymore and…there is this “no big deal” kind of mentality. So if I was a 20-year-old top, I would think my chances were really, really low and I’d probably think the group of men that I am having sex with, also in their 20s, don’t have HIV. For the older set, a lot of that is just because they’re living longer but also because many of them come out of relationships and start dating again and they fall into practices where they’re either getting involved with drugs or partying and having sex with younger men, and they make mistakes. You think that our community would understand more about how we contract HIV, yet we still fall prey to the human error, and that’s why the new cases of HIV are still consistent at 50,000 a year.
SEAN BLACK
There’s a misconception about HIV because things have improved. The treatments have gotten better, but we’re no nearer to a cure, no nearer to a vaccine, and even though you are going to live a longer life, you’re going to live a longer life with HIV and that means antiretroviral medication. I don’t know anybody that wakes up and says, “Oh! I’m so glad I have these HIV medications I have to take every day.” The younger generation right now is looking at a very long life of HIV when you seroconvert in your 20s. And we’ve seen the other side effects: kidney problems, bone problems, higher instances of lipodystrophy. These are all things we have to contend with, so why not have conversations about safe sex and getting tested? We still don’t get tested frequently. It’s amazing to me that gay men don’t want to get tested. And now that we have rapid HIV testing, where you don’t wait a week for results and you can do it at home [with OraQuick] all of these things are tools, so why not use them? A recent survey from the Center for HIV Educational Studies found that 10 percent of men on Grindr have never even had an HIV test and a third of those tell their potential partners that they’re HIV-negative.
That’s several hundred thousand men who don’t know their status but do claim to be negative. They don’t even know their status to begin with; they don’t get tested, they don’t want to know, and I think you can make that argument for a lot of diseases. I take care of people all the time who don’t even want to get screened for cancer, and I know women who don’t have mammograms or pap smears. People are afraid of knowing things. We don’t really talk about the bottom-shaming that happens in this conversation about PrEP. There’s a power dynamic here: Only one person wears the condom—it’s the top who puts on the condom, and in that drunken moment or that hypersexual moment or whatever, it’s the bottom sort of left hoping or demanding that he does. People don’t want to talk about their status. Gay men [will say], “I don’t want to talk about whether I’m a top or a bottom—I just have sex.” The person who is the receptive partner has to say, “OK, I am at the highest risk for contracting HIV, I’m going to go in and ask my doctor about this.” And then they feel shame about that. I believe that while Truvada is not the answer to halting the AIDS epidemic, we have to acknowledge that condom usage has dropped off and that in moving forward, we have to consider a variety of safe sex practices. So that means condoms and maybe Truvada. I see a lot of parallels between the birth control pill and PrEP. A lot of the arguments against PrEP sound like the arguments people had against the pill, like, Why would you take a daily preventive pill for something you don’t do every day? I read where people have made this analogy between PrEP and birth control, and I can understand it, and it did have the same shame effect to it. If you were a woman and wanted birth control, you were considered a whore. [Laughs] And that was one way of frightening women into not taking birth control. You say there’s a better comparison, though. Yes, PrEP itself is not exclusive to HIV. We do malaria PrEP. If you go to Africa, doctors put you on malaria pills before you go—you take it while you’re there, then you take it for about a week after you return. We do PrEP for many other diseases. I think we just attach the sexual stigma to it because it is contracted through sex, and I think it’s really a calculated endeavor to make men, especially gay men, feel bad about themselves once again. ✜ NOVEMBER /DECEMBER 2014 •
HIV plus
35
t is not easy to surprise Alex Garner,the founding editor of Positive Frontiers, who conducts HIV awareness and prevention programs in cities across the country. But during a recent trip to Los Angeles, he noticed a change that made him pause: Since his last visit only a few months earlier, gay men were beginning to talk more openly about using the drug Truvada as pre-exposure prophylaxis, or PrEP—used by HIV-negative people to prevent HIV infection. Garner, who has been educating the LGBT community on Truvada’s use for PrEP since it was first approved by the Food and Drug Administration and is the creator of one of the first blogs on the subject, observed that the drug was being mentioned in online dating profiles and in hookup apps like Grindr. Moreover, gay men were more likely to admit in conversation that they were taking it, and they were discussing it in an increasingly “empowered, nonstigmatized way.” “I wouldn’t say it’s become ubiquitous, but it’s become more noticeable than it was six months ago,” he says, recounting that a friend he had not seen in years stopped him on the street to talk about PrEP, which for Garner was “a clear indication things are starting to shift.” This shift is good news for activists like Garner, who work to raise awareness and combat stigma regarding PrEP, which in studies has been shown to prevent HIV up to 90 percent if administered daily. Until recently, advocating for PrEP has been an uphill battle. Notably, Michael Weinstein, the head of the AIDS Healthcare Foundation, has discouraged it due to his belief that it will decrease the use of condoms as well as his fear that gay men will 36
HIV plus
• NOVEMBER /DECEMBER 2014
not take it as prescribed, and he has branded it a “party drug.” The phrase “Truvada whore” has also come into use among gay men as a slut-shaming label akin to the scarlet letter pinned on Hester Prynne, although recently gay and HIV awareness activists and PrEP takers have reclaimed the phrase much like young people did with the word “queer” 20 years ago. Recent developments, including recommendations from the World Health Organization and the Centers for Disease Control and Prevention, have softened this stigma, particularly in light of the recent CDC report announcing that the annual number of new HIV diagnoses among gay and bisexual men between the ages of 13 and 24 increased by a staggering 132.5 percent between 2001 and 2011. WHO estimates that PrEP use by gay men over the next 10 years could reduce worldwide HIV transmission by 20 to 25 percent. The impact of statistics such as these as well as PrEP’s heightened visibility has affected areas beyond the medical world, including social dynamics among gay men. Garner believes that as a result of PrEP, serodiscordant (or “magnetic”) couples, in which one partner is positive and one partner is negative, are becoming much more common. “The fundamental dynamics between negative and positive men have shifted in a way that I personally haven’t seen in quite some time,” says Garner, who attributes this change to “PrEP as well as treatment, prevention, and the understanding of what one’s undetectable viral load means.” As the saying goes, AIDS is no longer a death sentence. With proper medication and care, an HIV-positive person can suppress
STYLE TTT/THINKSTOCK
A spike in relationships that bridge the so-called “viral divide” may be an unintended side effect of the HIV-prevention drug, Truvada.
FUSE/THINKSTOCK
the virus in his body to the point that it is “undetectable,” a word that is also increasingly used in dating profiles. Translation? That individual has nearly eliminated the chance of passing the virus on to others, even if he practices condomless sex. This is called “treatment as prevention.” All these new approaches to safer sex, Garner notes, have affected how negative and positive men relate to each other because they reduce a key emotional obstacle to love: fear. “That impacts how fearful they are of the sex that they’re having, how fearful they are of one another as well as the stigma that comes with the idea of someone being potentially infectious,” Garner says. Garner, who has been positive for 18 years, has seen this impact in his own love life. Until recently, he had dated other positive men almost exclusively. But, he says, “PrEP changes that. The possibility of sort of having a short-term or long-term relationship with someone who is serodiscordant seems much more realistic now because PrEP is available.” And it changes the relationship too. “The context of the relationship isn’t about fear of transmission, and we can choose to NOVEMBER /DECEMBER 2014 •
HIV plus
37
Everyone has their own preferred term to denote a relationship in which one partner is HIV-positive and the other is HIV-negative. Serodiscordant seems to be the most widely used term among health care professionals, HIV activists as well as organizations, and some people living with HIV. Many who identify as gay, bisexual, or transgender prefer the much more romantic term “magnetic couple” to mean the same thing, and some, though fewer, clinicians and academics use the term “serodifferential” as well.
INNOVATED CAPTURES/THINKSTOCK
have an intimate sexual experience without fear of transmission occurring,” he says. Though advances in prevention have moved society to this “juncture where things are rapidly changing,” Garner points out that major obstacles remain. Slut-shaming endures, even among health care professionals, who may make judgments about the sexual history of patients who choose to use PreP. In addition, many at-risk individuals, particularly in low-income and minority populations, have limited access to the drug—both to providers who can prescribe it and the means to purchase it. A yearly prescription can cost upward of $10,000, a steep price to pay, although insurance companies are increasingly agreeing to cover the cost and the maker, Gilead, offers a small prescription assistance stipend. For those negative men who have gained access to the drug, more doors have opened for finding a partner or relationship. And by engaging in a drug regimen that may be similar to that of potential partners and making required quarterly visits to health care providers, these men are finding opportunities to not only connect with poz men but also engage in new conversations about health. “For the longest time, we focused on the health and wellness and the engagement and care of positive men, and we sort of forgot negative men,” says Garner, adding that PrEP “provides an opportunity for us as a community to invest in care of negative men in a way that we haven’t done in a long while and to really speak openly about the experience of what it means to be negative.” Garner says the key to reducing stigma and increasing wellness is for both positive and negative men to talk openly about their health issues with each other. By having this dialogue, they may also rekindle that spark of commonality, in ways that can improve not just physical and but also mental health. “It’s complicated and it’s messy and at times very difficult,” he says of these conversations, which is also true of love itself. “But I also think that goes back to this idea of commonality. The majority of positive men can remember what it’s like to be negative, so we share that experience…because we know the struggle at times to stay negative.” ✜
38
HIV plus
• NOVEMBER /DECEMBER 2014
DA ILY DO SE
WORKING TOGETHER TO ACHIEVE AN AIDS-FREE GENERATION The intersection of knowledge, interventions, and opportunities is helping to achieve the goals of the National HIV/AIDS Strategy
A
By Douglas M. Brooks
s we consider HIV in our country, we find ourselves persons with HIV in 2011. This means that people arrive to care at the confluence of revolutionary scientific late in disease progression, with immune systems damaged by discoveries. We know when people living with HIV are opportunistic infections that can largely be prevented by initiaon antiretroviral treatment—and virally suppressed— tion of early treatment. President Obama and his administration it substantially reduces the chance of transmission. We know that have prioritized these demographic and geographic hot spots HIV-negative individuals can combine safer-sex practices with and the places where they intersect. Working with our partners biomedical prophylaxis and significantly reduce their chances of throughout the Department of Health and Human Services, and contracting the virus. We know that accessing medical care and across the federal government, we are building capacity to address treatment immediately following exposure offers an opportunity disparities. For example, HHS is supporting a three-year, $44.2 million Care and Prevention in the United States demonstrato avoid infection. tion project with the goal of developing innovative approaches to Augmenting this knowledge are reduce HIV- and AIDS-related morbidity and mortality among strong support for domestic HIV racial and ethnic minorities. This project focuses efforts on prevention, care, and treatment; improving outcomes along the HIV care continuum, and six greater opportunities to access of the eight funded states are in the South. care and optimize health outAt the Office of National AIDS Policy, we are working comes in large part because closely with the Rehabilitation Services Administration of the Affordable Care Act; of untreated patients of the Department of Education and the National Workand major advances for LGBT believe that side effects ing Positive Coalition, a group of people living with HIV, Americans, which President of HIV prescription to explore opportunities for people living with HIV who Obama has championed. This feel well and desire to return to work. We are also followintersection of knowledge, intermedicine are worse ing the recommendations of the HIV Care Conventions, and opportunities is than HIV itself. tinuum Initiative, such as tackling misconhelping to achieve the goals of the National HIV/AIDS Strategy: reducing ceptions, stigma, and discrimination new infections, improving access to care and to break down barriers. Earlier this year, the CDC launched the latest optimizing health outcomes for people living with HIV, but only communication campaign under its and reducing HIV-related health disparities. We have Act Against AIDS initiative—“Start the tools to realize the president’s vision, expressed Talking. Stop HIV”—aiming to in the strategy, that “the United States will become of treated patients eliminate stigma and discrimination a place where new HIV infections are rare and, when and promote open communication they do occur, every person, regardless of age, genreport that to be true. between gay and bisexual men about a der, race/ethnicity, sexual orientation, gender identity, or range of HIV prevention strategies. Addisocioeconomic circumstance, will have unfettered access tionally, the Department of Justice launched to high-quality, life-extending care, free from stigma and disADA.gov/AIDS, a portal to directly report cases of crimination.” And yet, even with the progress we have made, we still face some HIV-related discrimination. Upon release of the strategy four years ago, President Obama barriers that if not dismantled will prevent us from achieving that vision. While we have seen decreases among some populations, we reminded us that to achieve its goals, “government has to do its continue to see new infections among same-gender-loving men. part. But our ability to combat HIV/AIDS doesn’t rest on governSixty-three percent of the approximately 50,000 new infections ment alone.” As we continue to address the disparities, all of us in annually are among same-gender-loving men of all races and the LGBT community can also do our part by continuing our legethnicities, disproportionately among young gay men, especially acy, one of banding together and bonding, working to achieve the greater good. We could use a good measure of that energy as we all blacks and Latinos. We also see geographic disparities when we look toward the work toward reaching for an AIDS-free generation. ✜ South. According to Centers for Disease Control and Prevention data, nearly half of the 16 states in the Southern U.S. as well as the Douglas M. Brooks is the director of the White House Office of District of Columbia had higher-than-national-average estimated National AIDS Policy. This article originally appeared in The rates (per 100,000 population) of stage 3 (AIDS) classifications for Advocate magazine.
30 %
15%
N O V E M B E R / D E C E M B E R 2 0 1 4 • HIV plus 39
COMPLERA is a prescription medicine for adults who have never taken HIV-1 medicines before and who have no more than 100,000 copies/mL of virus in their blood. COMPLERA can also replace current HIV-1 medicines for some adults who have an undetectable viral load (less than 50 copies/mL) and whose healthcare provider determines that they meet certain other requirements. COMPLERA combines 3 medicines into 1 pill to be taken once a day with food. COMPLERA should not be used with other HIV-1 medicines.
Just the
one
for me
COMPLERA is a complete HIV-1 treatment in only 1 pill a day. Ask your healthcare provider if COMPLERA may be the one for you.
Pill shown is not actual size.
COMPLERA does not cure HIV-1 infection or AIDS. To control HIV-1 infection and decrease HIV-related illnesses you must keep taking COMPLERA. Ask your healthcare provider if you have questions about how to reduce the risk of passing HIV-1 to others. Always practice safer sex and use condoms to lower the chance of sexual contact with body fluids. Never reuse or share needles or other items that have body fluids on them. It is not known if COMPLERA is safe and effective in children under 18 years old.
IMPORTANT SAFETY INFORMATION What is the most important information I should know about COMPLERA? COMPLERA can cause serious side effects: • Build-up of an acid in your blood (lactic acidosis), which is a serious medical emergency. Symptoms of lactic acidosis include feeling very weak or tired, unusual (not normal) muscle pain, trouble breathing, stomach pain with nausea or vomiting, feeling cold especially in your arms and legs, feeling dizzy or lightheaded, and/or a fast or irregular heartbeat. • Serious liver problems. The liver may become large (hepatomegaly) and fatty (steatosis). Symptoms of liver problems include your skin or the white part of your eyes turns yellow (jaundice), dark “tea-colored” urine, light-colored bowel movements (stools), loss of appetite for several days or longer, nausea, and/or stomach pain. • You may be more likely to get lactic acidosis or serious liver problems if you are female, very overweight (obese), or have been taking COMPLERA for a long time. In some cases, these serious conditions have led to death. Call your healthcare provider right away if you have any symptoms of these conditions. • Worsening of hepatitis B (HBV) infection. If you also have HBV and stop taking COMPLERA, your hepatitis may suddenly get worse. Do not stop taking COMPLERA without first talking to your healthcare provider, as they will need to monitor your health. COMPLERA is not approved for the treatment of HBV.
Who should not take COMPLERA? Do not take COMPLERA if you: • Take a medicine that contains: adefovir (Hepsera), lamivudine (EpivirHBV), carbamazepine (Carbatrol, Equetro, Tegretol, Tegretol-XR, Teril, Epitol), oxcarbazepine (Trileptal), phenobarbital (Luminal), phenytoin (Dilantin, Dilantin-125, Phenytek), rifampin (Rifater, Rifamate, Rimactane, Rifadin), rifapentine (Priftin), dexlansoprazole (Dexilant), esomeprazole (Nexium, Vimovo), lansoprazole (Prevacid), omeprazole (Prilosec, Zegerid), pantoprazole sodium (Protonix), rabeprazole (Aciphex), more than 1 dose of the steroid medicine dexamethasone or dexamethasone sodium phosphate, or the herbal supplement St. John’s wort. • Take any other medicines to treat HIV-1 infection, unless recommended by your healthcare provider.
What are the other possible side effects of COMPLERA? Serious side effects of COMPLERA may also include: • New or worse kidney problems, including kidney failure. Your healthcare provider should do blood tests to check your kidneys before starting treatment with COMPLERA. If you have had kidney problems, or take other medicines that may cause kidney problems, your healthcare provider may also check your kidneys during treatment with COMPLERA. • Depression or mood changes. Tell your healthcare provider right away if you have any of the following symptoms: feeling sad or hopeless, feeling anxious or restless, have thoughts of hurting yourself (suicide) or have tried to hurt yourself.
Changes in liver enzymes: People who have had hepatitis B or C, or who have had changes in their liver function tests in the past may have an increased risk for liver problems while taking COMPLERA. Some people without prior liver disease may also be at risk. Your healthcare provider may do tests to check your liver enzymes before and during treatment with COMPLERA. • Bone problems, including bone pain or bones getting soft or thin, which may lead to fractures. Your healthcare provider may do tests to check your bones. • Changes in body fat can happen in people taking HIV-1 medicines. • Changes in your immune system. Your immune system may get stronger and begin to fight infections. Tell your healthcare provider if you have any new symptoms after you start taking COMPLERA. •
The most common side effects of COMPLERA include trouble sleeping (insomnia), abnormal dreams, headache, dizziness, diarrhea, nausea, rash, tiredness, and depression. Other common side effects include vomiting, stomach pain or discomfort, skin discoloration (small spots or freckles), and pain. Tell your healthcare provider if you have any side effects that bother you or do not go away.
What should I tell my healthcare provider before taking COMPLERA? All your health problems. Be sure to tell your healthcare provider if you have or had any kidney, mental health, bone, or liver problems, including hepatitis virus infection. • All the medicines you take, including prescription and nonprescription medicines, vitamins, and herbal supplements. COMPLERA may affect the way other medicines work, and other medicines may affect how COMPLERA works. Keep a list of all your medicines and show it to your healthcare provider and pharmacist. Do not start any new medicines while taking COMPLERA without first talking with your healthcare provider. • If you take rifabutin (Mycobutin). Talk to your healthcare provider about the right amount of rilpivirine (Edurant) you should take. • If you take antacids. Take antacids at least 2 hours before or at least 4 hours after you take COMPLERA. • If you take stomach acid blockers. Take acid blockers at least 12 hours before or at least 4 hours after you take COMPLERA. Ask your healthcare provider if your acid blocker is okay to take, as some acid blockers should never be taken with COMPLERA. • If you are pregnant or plan to become pregnant. It is not known if COMPLERA can harm your unborn baby. Tell your healthcare provider if you become pregnant while taking COMPLERA. • If you are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed. HIV-1 can be passed to the baby in breast milk. Also, some medicines in COMPLERA can pass into breast milk, and it is not known if this can harm the baby. •
You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088. Please see Brief Summary of full Prescribing Information with important warnings on the following pages.
Brief Summary of full Prescribing Information COMPLERA® (kom-PLEH-rah) (emtricitabine 200 mg, rilpivirine 25 mg, tenofovir disoproxil fumarate 300 mg) tablets Brief summary of full Prescribing Information. For more information, please see the full Prescribing Information, including Patient Information. What is COMPLERA? • COMPLERA is a prescription medicine used as a complete HIV-1 treatment in one pill a day. COMPLERA is for adults who have never taken HIV-1 medicines before and who have no more than 100,000 copies/mL of virus in their blood (this is called ‘viral load’). Complera can also replace current HIV-1 medicines for some adults who have an undetectable viral load (less than 50 copies/mL) and whose healthcare provider determines that they meet certain other requirements. • COMPLERA is a complete regimen and should not be used with other HIV-1 medicines. HIV-1 is the virus that causes AIDS. When used properly, COMPLERA may reduce the amount of HIV-1 virus in your blood and increase the amount of CD4 T-cells, which may help improve your immune system. This may reduce your risk of death or getting infections that can happen when your immune system is weak. • COMPLERA does not cure HIV-1 or AIDS. You must stay on continuous HIV-1 therapy to control HIV-1 infection and decrease HIV-related illnesses. • Ask your healthcare provider about how to prevent passing HIV-1 to others. Do not share or reuse needles, injection equipment, or personal items that can have blood or body fluids on them. Do not have sex without protection. Always practice safer sex by using a latex or polyurethane condom to lower the chance of sexual contact with semen, vaginal secretions, or blood. What is the most important information I should know about COMPLERA? COMPLERA can cause serious side effects, including: • Build-up of an acid in your blood (lactic acidosis). Lactic acidosis can happen in some people who take COMPLERA or similar (nucleoside analogs) medicines. Lactic acidosis is a serious medical emergency that can lead to death. Lactic acidosis can be hard to identify early, because the symptoms could seem like symptoms of other health problems. Call your healthcare provider right away if you get any of the following symptoms which could be signs of lactic acidosis: – feel very weak or tired – have unusual (not normal) muscle pain – have trouble breathing – having stomach pain with nausea or vomiting – feel cold, especially in your arms and legs – feel dizzy or lightheaded – have a fast or irregular heartbeat • Severe liver problems. Severe liver problems can happen in people who take COMPLERA. In some cases, these liver problems can lead to death. Your liver may become large (hepatomegaly) and you may develop fat in your liver (steatosis). Call your healthcare provider right away if you get any of the following symptoms of liver problems: – your skin or the white part of your eyes turns yellow (jaundice) – dark “tea-colored” urine – light-colored bowel movements (stools) – loss of appetite for several days or longer – nausea – stomach pain
• You may be more likely to get lactic acidosis or severe liver problems if you are female, very overweight (obese), or have been taking COMPLERA for a long time. • Worsening of Hepatitis B infection. If you have hepatitis B virus (HBV) infection and take COMPLERA, your HBV may get worse (flare-up) if you stop taking COMPLERA. A “flare-up” is when your HBV infection suddenly returns in a worse way than before. COMPLERA is not approved for the treatment of HBV, so you must discuss your HBV with your healthcare provider. – Do not run out of COMPLERA. Refill your prescription or talk to your healthcare provider before your COMPLERA is all gone. – Do not stop taking COMPLERA without first talking to your healthcare provider. – If you stop taking COMPLERA, your healthcare provider will need to check your health often and do blood tests regularly to check your HBV infection. Tell your healthcare provider about any new or unusual symptoms you may have after you stop taking COMPLERA. Who should not take COMPLERA? Do not take COMPLERA if you also take any of the following medicines: • Medicines used for seizures: carbamazepine (Carbatrol, Equetro, Tegretol, Tegretol-XR, Teril, Epitol); oxcarbazepine (Trileptal); phenobarbital (Luminal); phenytoin (Dilantin, Dilantin-125, Phenytek) • Medicines used for tuberculosis: rifampin (Rifater, Rifamate, Rimactane, Rifadin); rifapentine (Priftin) • Certain medicines used to block stomach acid called proton pump inhibitors (PPIs): dexlansoprazole (Dexilant); esomeprazole (Nexium, Vimovo); lansoprazole (Prevacid); omeprazole (Prilosec, Zegerid); pantoprazole sodium (Protonix); rabeprazole (Aciphex) • Certain steroid medicines: More than 1 dose of dexamethasone or dexamethasone sodium phosphate • Certain herbal supplements: St. John’s wort • Certain hepatitis medicines: adefovir (Hepsera), lamivudine (Epivir-HBV) Do not take COMPLERA if you also take any other HIV-1 medicines, including: • Other medicines that contain tenofovir (ATRIPLA, STRIBILD, TRUVADA, VIREAD) • Other medicines that contain emtricitabine or lamivudine (ATRIPLA, Combivir, EMTRIVA, Epivir, Epzicom, STRIBILD, Trizivir, TRUVADA) • rilpivirine (Edurant), unless you are also taking rifabutin (Mycobutin) COMPLERA is not for use in people who are less than 18 years old. What are the possible side effects of COMPLERA? COMPLERA may cause the following serious side effects: • See “What is the most important information I should know about COMPLERA?” • New or worse kidney problems, including kidney failure. Your healthcare provider should do blood and urine tests to check your kidneys before you start and while you are taking COMPLERA. If you have had kidney problems in the past or need to take another medicine that can cause kidney problems, your healthcare provider may need to do blood tests to check your kidneys during your treatment with COMPLERA. • Depression or mood changes. Tell your healthcare provider right away if you have any of the following symptoms: – feeling sad or hopeless – feeling anxious or restless – have thoughts of hurting yourself (suicide) or have tried to hurt yourself • Change in liver enzymes. People with a history of hepatitis B or C virus infection or who have certain liver enzyme changes may have an
increased risk of developing new or worsening liver problems during treatment with COMPLERA. Liver problems can also happen during treatment with COMPLERA in people without a history of liver disease. Your healthcare provider may need to do tests to check your liver enzymes before and during treatment with COMPLERA. • Bone problems can happen in some people who take COMPLERA. Bone problems include bone pain, softening or thinning (which may lead to fractures). Your healthcare provider may need to do tests to check your bones. • Changes in body fat can happen in people taking HIV-1 medicine. These changes may include increased amount of fat in the upper back and neck (“buffalo hump”), breast, and around the main part of your body (trunk). Loss of fat from the legs, arms and face may also happen. The cause and long term health effect of these conditions are not known. • Changes in your immune system (Immune Reconstitution Syndrome) can happen when you start taking HIV-1 medicines. Your immune system may get stronger and begin to fight infections that have been hidden in your body for a long time. Tell your healthcare provider if you start having any new symptoms after starting your HIV-1 medicine. The most common side effects of COMPLERA include: • Trouble sleeping (insomnia), abnormal dreams, headache, dizziness, diarrhea, nausea, rash, tiredness, depression Additional common side effects include: • Vomiting, stomach pain or discomfort, skin discoloration (small spots or freckles), pain Tell your healthcare provider if you have any side effect that bothers you or that does not go away. • These are not all the possible side effects of COMPLERA. For more information, ask your healthcare provider. • Call your healthcare provider for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088. What should I tell my healthcare provider before taking COMPLERA? Tell your healthcare provider about all your medical conditions, including: • If you have or had any kidney, mental health, bone, or liver problems, including hepatitis B or C infection. • If you are pregnant or plan to become pregnant. It is not known if COMPLERA can harm your unborn child. – There is a pregnancy registry for women who take antiviral medicines during pregnancy. The purpose of this registry is to collect information about the health of you and your baby. Talk to your healthcare provider about how you can take part in this registry. • If you are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed if you take COMPLERA. – You should not breastfeed if you have HIV-1 because of the risk of passing HIV-1 to your baby. – Two of the medicines in COMPLERA can pass to your baby in your breast milk. It is not known if this could harm your baby. – Talk to your healthcare provider about the best way to feed your baby. Tell your healthcare provider about all the medicines you take, including prescription and nonprescription medicines, vitamins, and herbal supplements: • COMPLERA may affect the way other medicines work, and other medicines may affect how COMPLERA works. • If you take certain medicines with COMPLERA, the amount of COMPLERA in your body may be too low and it may not work to help control your HIV-1 infection. The HIV-1 virus in your body may become resistant to COMPLERA or other HIV-1 medicines that are like it.
• Be sure to tell your healthcare provider if you take any of the following medicines: – Rifabutin (Mycobutin), a medicine to treat some bacterial infections. Talk to your healthcare provider about the right amount of rilpivirine (Edurant) you should take. – Antacid medicines that contain aluminum, magnesium hydroxide, or calcium carbonate. Take antacids at least 2 hours before or at least 4 hours after you take COMPLERA. – Certain medicines to block the acid in your stomach, including cimetidine (Tagamet), famotidine (Pepcid), nizatidine (Axid), or ranitidine hydrochloride (Zantac). Take the acid blocker at least 12 hours before or at least 4 hours after you take COMPLERA. Some acid blocking medicines should never be taken with COMPLERA (see “Who should not take COMPLERA?” for a list of these medicines). – Medicines that can affect how your kidneys work, including acyclovir (Zovirax), cidofovir (Vistide), ganciclovir (Cytovene IV, Vitrasert), valacyclovir (Valtrex), and valganciclovir (Valcyte). – clarithromycin (Biaxin) – erythromycin (E-Mycin, Eryc, Ery-Tab, PCE, Pediazole, Ilosone) – fluconazole (Diflucan) – itraconazole (Sporanox) – ketoconazole (Nizoral) – methadone (Dolophine) – posaconazole (Noxafil) – telithromycin (Ketek) – voriconazole (Vfend) Know the medicines you take. Keep a list of all your medicines and show it to your healthcare provider and pharmacist when you get a new medicine. Do not start any new medicines while you are taking COMPLERA without first talking with your healthcare provider. How should I take COMPLERA? • Stay under the care of your healthcare provider during treatment with COMPLERA. • Take COMPLERA exactly as your healthcare provider tells you to take it. • Always take COMPLERA with food. Taking COMPLERA with food is important to help get the right amount of medicine in your body. A protein drink is not a substitute for food. If your healthcare provider decides to stop COMPLERA and you are switched to new medicines to treat HIV-1 that includes rilpivirine tablets, the rilpivirine tablets should be taken only with a meal. Keep COMPLERA and all medicines out of reach of children. This Brief Summary summarizes the most important information about COMPLERA. If you would like more information, talk with your healthcare provider. You can also ask your healthcare provider or pharmacist for information about COMPLERA that is written for health professionals, or call 1-800-445-3235 or go to www.COMPLERA.com. Issued: June 2014
COMPLERA, the COMPLERA Logo, EMTRIVA, GILEAD, the GILEAD Logo, GSI, HEPSERA, STRIBILD, TRUVADA, VIREAD, and VISTIDE are trademarks of Gilead Sciences, Inc., or its related companies. ATRIPLA is a trademark of Bristol-Myers Squibb & Gilead Sciences, LLC. All other marks referenced herein are the property of their respective owners. ©2014 Gilead Sciences, Inc. All rights reserved. CPAC0115 08/14
YOU 2.0
I
n that famous scene from The Matrix, Keanu Reeves’s character, Neo, learns the art of kung fu in a few seconds through a synthetic memory that Morpheus uploads to his brain. We’re not quite there yet, but thanks to the brain’s highly pliable and adaptive nature (scientists call this “neuroplasticity”) we now know that it’s possible to train the brain the same way we train muscles in the gym. It works like this: Thoughts produce emotions. Those feelings trigger chemicals in the brain that cause responses in the central nervous system such as stress, exhaustion, the fight-or-flight response—all enemies of the immune system. So learning how to cool off this stress response cycle is super important. In Buddhism thoughts are regarded much like a “sixth sense” (just another source of feedback, but still distinct from the individual). Activities such as writing, meditation, and prayer can help to slow down and harness thoughts. Affirmations, like mantras, are another tool to get your brain working for you. Here are some easy ways to get affirmations into your day:
1. On your car’s rearview mirror, write an affirmation with a dry-erase pen. It will register in your brain every time you glance at the mirror. Speak the affirmation out loud. Use caution while driving.
2. Write another affirmation on your bathroom mirror, using a bar of soap or dry-erase marker.
3. If you have a smartphone, record a voice memo containing a list of affirmations. Say each affirmation twice, slowly. Listen to this recording while jogging, working out, or at work. As you listen, say the affirmation out loud the second time.
4. Create repeating calendar events at random times each day with your affirmations. They will pop up on your computer or smartphone and break up your day.
5. Place a Post-it note on your door so you’ll see it as you come and go. 6. Get a small tattoo that is symbolic of your affirmation. Be sure the ink is easily visible to you so it can be a reminder.
7. Make rotating, self-changing desktop patterns for your computers at home or work.
Remember to rotate the affirmations every week. Your level of focus and engagement with the affirmations directly affects their impact. The more engaged and thoughtful you are, the more these messages imprint on the brain. ✜
Plus’s wellness editor Sam Page is a fitness trainer and lifestyle expert in Los Angeles.
44
HIV plus
•
NOVEMBER /DECEMBER 2014
ASK THE DOCTOR My boyfriend is thinking about going on PrEP. Is that a good idea? Maybe. In the war against the spread of HIV, doctors and patients have powerful new weapons, including pre-exposure prophylaxis, a.k.a. PrEP. As with any weapon, we must use PrEP with caution and respect lest it backfire, causing more harm than good. Based on recent studies, PrEP works by lowering the ability of HIV to establish infection after an exposure when taken daily (the risk of getting HIV is directly proportional to medication levels) and when used with condoms. What you should know: • You cannot miss doses. It is far too risky to conclude that even if you miss doses, PrEP may still provide reliable HIV prevention. And while the diagnoses of other sexually transmitted infections were not statistically different among study participants using PrEP compared to those who weren’t, the percentage of new STI infections in the PrEP group was certainly higher, suggesting a trend toward riskier sexual behavior (and reinforcing the importance of using condoms). • There can be side effects. Side effects of PrEP are generally well tolerated. However, kidney or liver damage is a real risk. We’ll need some time and experience to link other factors—for example, alcohol use—with the risk of organ damage in people using PrEP. • You need to have an honest discussion of risks, benefits, and side effects with your health care provider. Before starting PrEP, tell your provider if you have symptoms of a viral infection, and after starting, report unusual symptoms or side effects as soon as they occur. After you start, it takes up to seven days for PrEP to be effective. And make sure you’re screened regularly for other STIs, many of which you may have and spread to partners even with no symptoms. Misinformation on the correct use of PrEP may be as harmful as not using PrEP at all. ✜
Plus’s wellness editor Joseph Arcuri Jr., MD, has a private practice in internal medicine in New York City’s Chelsea neighborhood, with a focus on preventive medicine, men’s health, and HIV care. He’s also an assistant professor of medicine at the Icahn School of Medicine at Mount Sinai.
THINKSTOCK
SEVEN EASY WAYS TO GET AFFIRMATIONS INTO YOUR LIFE
YOU 2.0
EIGHT EASY WAYS TO BEAT FINANCIAL STRESS WHEN YOU HAVE HIV When you are living with HIV, financial pressures can come from lots of different sources. Here’s how to nip that stress in the bud
I
don’t know how I am going to afford this. I’m always worried about money. I’m scared about whether my cash is going to hold until the end of the month. Sound like you? In our current economic situation, if you haven’t found a reason of your own to be worried about your finances, the news does a pretty good job of giving you a daily reason to worry. It’s still rough out there. And most of us are feeling it. When you are living with HIV, financial pressures can come from lots of different sources. Co-pays for doctor visits and medications. Vitamins or supplement products that may not be covered by your health plan. Even affording the nutritious foods you know you should be eating for optimal health can be an issue. But here’s something to consider: Uncertainty about money can lead to stress. And stress can have a negative impact on your physical and mental health, which is why finding ways to manage that stress can be one of the best things you do for yourself.
Try these suggestions: Start with acceptance. There are some things in life we
can control and some things we can’t. Even in the best of times, the economy resides on the “can’t control” side. Battling something you can’t control—including spending a lot of your precious energy complaining and telling yourself that life shouldn’t be this way—is a recipe for more stress.
Don’t create catastrophes. It’s hard to be surrounded by
JOHAVEL/THINKSTOCK
discussions of deficits and not let your mind wander into thinking about your own financial deficits and do some “what if” thinking. But without facts, our minds fill in the gaps, often, with a worstcase scenario. The future, for better or for worse, is not ours to predict.
Be grateful. One way to counter this mind-set is to make a list of what’s working in your life—the people you can count on; the joys in your life, big and small. Spending some time each day being grateful can help avoid that “glass half empty” view of life. Get support. I’m not saying that misery loves company, but I
am saying that we are all in this together. Difficult times can be an opportunity to strengthen your connections with the important
people in your life. Spend time with people you care about and who care about you.
Stay optimistic. What are you telling yourself about your
finances? If your internal conversation is all about how awful the future looks, then it’s time to rewire that negative thinking and replace it with more optimistic self-talk. Remind yourself: “I can’t control the future. I’m taking it one day at a time, and I’m doing the best I can.”
Keep your focus on your health. Back to the control
thing: You do have control over doing everything possible to stay as healthy as possible. Take good care of yourself today and you will be all that much better prepared to face any challenges in the future.
Build in stress relief. Managing your stress level is an
important part of your self-care regimen. Build activities you enjoy into your daily routine. Spend time with family members. Use relaxation techniques. Do something about your stress before it does something to you.
Reach out to your fellow travelers. Nobody knows
what it’s like to live with HIV better than someone who is traveling the same road. Talk with a friend. Reach out through support groups or online. Share your burdens, your joys, your questions, and your advice. We are all in this together. ✜
Our mental health editor, Gary McClain, Ph.D., 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. He blogs regularly at HIVPlusMag.com. N O V E M B E R / D E C E M B E R 2 0 1 4 • HIV plus 45
TREATMENT CHRONICLES
Good News for Your Liver New drugs are being hailed as a cure for the hepatitis C virus, a common coinfection with HIV. What does this mean for you?
S
ovaldi, approved last year for the treatment of hepatitis C—a common and potentially serious coinfection in people with HIV—is being called a breakthrough cure for the liver disorder, albeit an expensive one, and treatments touted as even more potent are in the pipeline. The Gilead Sciences medication, taken as part of a drug cocktail, has managed to clear the hepatitis C virus, or HCV, in about 90 percent of cases in only about 12 weeks, according to several studies, whereas the best previously available drugs only had a 65 to 75 percent cure rate. And this has been with few side effects, usually just mild headache and fatigue. “The word is cure. To me, the cure of hep C is one of the most significant medical developments of the last 50 years,” Greg Everson, a physician at the University of Colorado Hospital, which has been the site of several trials, told The Denver Post. “We’ve been able to cure hep C since the early 1990s, but the older drug combinations had a much lower success rate. Sovaldi is the new backbone therapy.” Another HCV drug approved by the FDA in 2013, Janssen Research and Development’s Olysio, has shown good results too, and scientists are now testing a combination of the two, which may be even more effective, as well as other promising drugs. For instance, a clinical trial of Sovaldi combined with ledipasvir, another drug developed by Gilead, showed nearly a 100 percent cure rate, The New England Journal of Medicine reported earlier this year. Gilead has applied for FDA approval of the combo. The Sovaldi-Olysio combination, also awaiting FDA approval but already being prescribed off-label by some doctors, has produced cure rates upward of 90 percent in trials.
46
HIV plus
• N O V E M B E R / D E C E M B E R 2 0 14
HCV is present in an estimated one-quarter of all people with HIV and more than half of HIV-infected injection drug users. If left untreated, it can produce life-threatening complications. “It’s a devastating disease,” Everson told the Post. “It can smolder for years without symptoms, then it destroys the liver—cirrhosis, cancer.” Sovaldi (generic name sofosbuvir) and Olysio (simeprevir), like previously available HCV drugs, are usually administered with another antiviral drug, Rebetol (ribivarin), and injections of interferon, a lab-produced copy of a natural protein that aids the immune system. Sovaldi can be used without the interferon injections in some cases, making for an all-pill regimen and avoiding the substantial side effects often associated with interferon. A study presented at this summer’s International AIDS Conference showed the interferon-free regimen to be effective against HCV in more than 80 percent of patients who also have HIV, although the combo of Sovaldi and ledipasvir, also without interferon, has produced more spectacular results. But cost is a major consideration. Sovaldi costs $1,000 a pill, and some insurers have been reluctant to cover it. (Gilead offers a patient assistance program to help with the cost.) An activist group, the National Coalition on Health Care, has objected to the price, and members of Congress have initiated an investigation into how Gilead arrived at it. “Clearly, $1,000 a pill strikes people as completely unreasonable,” coalition president John Rother recently told The New York Times. Gilead, he said, “stepped in it when they decided to go for that cost per pill, because people can’t imagine why that could be justified.”
MA_ RISH/THINKSTOCK
Others point out, though, that 12 weeks is a brief period for treatment, whereas drugs for other infections, such as HIV, have to be taken for a lifetime. The bill for a 12-week regimen of Sovaldi amounts to $84,000, but lifetime HIV treatment costs about $380,000, according to federal government estimates. And treating HCV is not only better for the patient than letting the virus go unchecked, it’s cheaper in the long run than dealing with the serious complications it can cause. What’s causing insurers consternation is that the bill for Sovaldi comes all at once rather than being spread out over many years. Some doctors and business analysts predict that as more HCV drugs are developed, competition will bring prices down, and that competition is heating up. Bristol-Myers Squibb, AbbVie, and Merck, through its recently announced acquisition of Idenix Pharmaceuticals, are all working on HCV drugs too. Another important consideration is identif ying more people who can benefit from HCV treatment. Those with HIV should be routinely tested, and the Centers for Disease Control and Prevention recommends testing for all people in the baby boom generation, born between 1945 and 1965. The CDC estimates 3 million to 4 million Americans carry the hep C virus and don’t know it. The strategy of testing baby boomers “will really home in on those who are at greatest risk of disease,” said Harvard Medical School professor Raymond Chung, MD, in an interview with a Harvard blog. “If fully implemented, it might be able to identify another million people previously undiagnosed with hepatitis C.”✜
INCIVEK The success of Sovaldi is having a ripple effect across the drug industry: Incivek, one of the older drugs used to treat hepatitis C, is going off the market. Incivek’s maker, Vertex Pharmaceuticals, ended distribution of the drug in the U.S. in October, as so many patients are being treated with Sovaldi instead. Incivek was approved by the Food and Drug Administration in 2011 and soon had annual sales amounting to $1 billion, but Sovaldi had sales of $6 billion in just the first half of 2014, according to the Reuters news service. By Trudy Ring
NOV EMBER / DECEMBER 2014 •
HIV plus
47
ADVERTISEMENT
WHY ARE SOME PEOPLE BETTER AT STAYING ON THEIR MEDS? Did you know that which pharmacy you go to for your prescriptions might actually determine how well you do on your medication? It’s true. A 2011 study in the Journal of Managed Care Pharmacy showed that for people with HIV, going to an HIV-specialized pharmacy was the most important factor associated with likelihood of antiretroviral medication adherence. The same study found that those patients were more likely to remain on a single antiretroviral therapy (ART) regimen and are much less likely to have excess refills or use medications that can’t be taken together. Even better: Going to an HIV-specialist pharmacy doesn’t cost more. The reason why these pharmacies work better is simple. Many, like Walgreens (which has more than 700 HIV-specialized pharmacies in the U.S. and Puerto Rico), employ pharmacists who have been specially trained to understand
your HIV drug regimens and who are better at knowing the side effects or drug interactions your medications may have with each other or with other over-the-counter medications. (This includes PreP, the HIV-prevention pill.) Studies have found that knowledge is key to ensuring your medication adherence, as is having a pharmacy that can offer you private, one-on-one counseling with a trained pharmacist; aligning refill dates so your medications can be picked up the same day; and the availability of free home delivery. Walgreens’ HIV-specialized pharmacies offer all of these options, as well as a confidential pharmacy online chat and a free mobile app with tools to remind you to take your pills and refill your prescriptions. Remember, you deserve a pharmacy that knows and cares for the whole you. Find out more at HIV.Walgreens.com.
A New Video Series Presented by HIV Plus and Walgreens LAUNCHING THIS FALL ON HIVPLUSMAG.COM
WE KNOW HIV/AIDS medication therapy But we also know you want a pharmacy that cares for the whole you. That’s why the pharmacists at our HIV-specialized pharmacies offer complete, compassionate care for your individual needs now and in the years ahead. You can rely on us to provide services such as: • Expert guidance in managing HIV, combined with other conditions you may have • A range of immunizations to help you avoid illness*
To learn more, visit HIV.Walgreens.com. * Vaccines subject to availability. Not all vaccines available in all locations. State-, age- and health-related restrictions may apply.
©2014 Walgreen Co. All rights reserved.
14CS0018-A-0814
“By managing you, HIV, I can devote all my time and energy to my son.” Malina - Bronx, NY Living with HIV since 2010.
HIV
TREATMENT
WORKS
The moment I received my HIV diagnosis, negative thoughts rushed through my mind. Have I passed it on to my infant son? Will I live to raise him? Can I have more children? Like many people, I didn’t know a lot about HIV. But with time, the right doctor, the right medicine and a strong support group, I discovered that I could live a full life. I’m on treatment, my son is HIV-negative, and we’re both healthy and living well with the love of our family and friends.
Get in care. Stay in care. Live well. cdc.gov/HIVTreatmentWorks