NEW HIV MEDS TREAT RESISTANCE BECAUSE YOU’RE MORE THAN YOUR STATUS
JUST DIAGNOSED?
10 COPING STRATEGIES 5 TIPS ON COMING OUT 7 WAYS TO STAY SAFE
BALLS TO THE WALL
TWIGGY PUCCI GARÇON AND THE KIKI SCENE
MICHAEL K. WILLIAMS THE MAN WHO MADE “OMAR” AND “CHALKY” HOUSEHOLD NAMES IS BACK IN AN HIV-POSITIVE, GAY ROLE THAT’S VERY PERSONAL
MAY/JUNE 2017 www.hivplusmag.com
WHAT IS GENVOYA®? GENVOYA is a 1-pill, once-a-day prescription medicine used to treat HIV-1 in people 12 years and older and weigh at least 77 lbs. It can either be used in people who are starting HIV-1 treatment and have never taken HIV-1 medicines before, or people who are replacing their current HIV-1 medicines and whose healthcare provider determines they meet certain requirements. These include having an undetectable viral load (less than 50 copies/mL) for 6 months or more on their current HIV-1 treatment. GENVOYA combines 4 medicines into 1 pill taken once a day with food. GENVOYA is a complete HIV-1 treatment and should not be used with other HIV-1 medicines. GENVOYA does not cure HIV-1 or AIDS. To control HIV-1 infection and decrease HIV-related illnesses, you must keep taking GENVOYA. Ask your healthcare provider if you have questions about how to reduce the risk of passing HIV-1 to others. Always practice safer sex and use condoms to lower the chance of sexual contact with body fluids. Never reuse or share needles or other items that have body fluids on them.
medicines that should not be taken with GENVOYA. Do not start a new medicine without telling your healthcare provider. • The herbal supplement St. John’s wort. • Any other medicines to treat HIV-1 infection.
What are the other possible side effects of GENVOYA? Serious side effects of GENVOYA may also include: • Changes in body fat, which can happen in people taking HIV-1 medicines. • Changes in your immune system. Your immune system may get stronger and begin to fight infections. Tell your healthcare provider if you have any new symptoms after you start taking GENVOYA. • Kidney problems, including kidney failure. Your healthcare provider should do blood and urine tests to check your kidneys. If you develop new or worse kidney problems, they may tell you to stop taking GENVOYA.
IMPORTANT SAFETY INFORMATION
The most common side effect of GENVOYA is nausea. Tell your healthcare provider if you have any side effects that bother you or don’t go away.
What is the most important information I should know about GENVOYA?
What should I tell my healthcare provider before taking GENVOYA?
GENVOYA may cause serious side effects:
• All your health problems. Be sure to tell your healthcare provider if you have or have had any kidney or liver problems, including hepatitis virus infection.
• Build-up of an acid in your blood (lactic acidosis), which is a serious medical emergency. Symptoms of lactic acidosis include feeling very weak or tired, unusual muscle pain, trouble breathing, stomach pain with nausea or vomiting, feeling cold (especially in your arms and legs), feeling dizzy or lightheaded, and/or a fast or irregular heartbeat. • Serious liver problems. The liver may become large and fatty. Symptoms of liver problems include your skin or the white part of your eyes turning yellow (jaundice); dark “tea-colored” urine; light-colored bowel movements (stools); loss of appetite; nausea; and/or pain, aching, or tenderness in the right side of your stomach area. • You may be more likely to get lactic acidosis or serious liver problems if you are female, very overweight, or have been taking GENVOYA for a long time. In some cases, lactic acidosis and serious liver problems have led to death. Call your healthcare provider right away if you have any symptoms of these conditions. • Worsening of hepatitis B (HBV) infection. GENVOYA is not approved to treat HBV. If you have both HIV-1 and HBV and stop taking GENVOYA, your HBV may suddenly get worse. Do not stop taking GENVOYA without first talking to your healthcare provider, as they will need to monitor your health.
Who should not take GENVOYA? Do not take GENVOYA if you take:
• All the medicines you take, including prescription and overthe-counter medicines, vitamins, and herbal supplements. Other medicines may affect how GENVOYA works. Keep a list of all your medicines and show it to your healthcare provider and pharmacist. Ask your healthcare provider if it is safe to take GENVOYA with all of your other medicines. • If you take antacids. Take antacids at least 2 hours before or after you take GENVOYA. • If you are pregnant or plan to become pregnant. It is not known if GENVOYA can harm your unborn baby. Tell your healthcare provider if you become pregnant while taking GENVOYA. • If you are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed. HIV-1 can be passed to the baby in breast milk.
You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088. Please see Important Facts about GENVOYA including Important Warnings on the following page.
• Certain prescription medicines for other conditions. It is important to ask your healthcare provider or pharmacist about
Ask your healthcare provider if GENVOYA is right for you, and visit GENVOYA.com to learn more.
GENVOYA does not cure HIV-1 or AIDS.
SHOW YOUR
POWER
Take care of what matters most—you. GENVOYA is a 1-pill, once-a-day complete HIV-1 treatment for people who are either new to treatment or people whose healthcare provider determines they can replace their current HIV-1 medicines with GENVOYA.
IMPORTANT FACTS This is only a brief summary of important information about GENVOYA and does not replace talking to your healthcare provider about your condition and your treatment.
(jen-VOY-uh) MOST IMPORTANT INFORMATION ABOUT GENVOYA
POSSIBLE SIDE EFFECTS OF GENVOYA
GENVOYA® may cause serious side effects, including: • Build-up of lactic acid in your blood (lactic acidosis), which is a serious medical emergency that can lead to death. Call your healthcare provider right away if you have any of these symptoms: feeling very weak or tired, unusual muscle pain, trouble breathing, stomach pain with nausea or vomiting, feeling cold (especially in your arms and legs), feeling dizzy or lightheaded, and/or a fast or irregular heartbeat. • Severe liver problems, which in some cases can lead to death. Call your healthcare provider right away if you have any of these symptoms: your skin or the white part of your eyes turns yellow (jaundice); dark “tea-colored” urine; light-colored bowel movements (stools); loss of appetite; nausea; and/or pain, aching, or tenderness in the right side of your stomach area. • Worsening of hepatitis B (HBV) infection. GENVOYA is not approved to treat HBV. If you have both HIV-1 and HBV, your HBV may suddenly get worse if you stop taking GENVOYA. Do not stop taking GENVOYA without first talking to your healthcare provider, as they will need to check your health regularly for several months. You may be more likely to get lactic acidosis or severe liver problems if you are female, very overweight, or have been taking GENVOYA for a long time.
GENVOYA can cause serious side effects, including: • Those in the “Most Important Information About GENVOYA” section. • Changes in body fat. • Changes in your immune system. • New or worse kidney problems, including kidney failure. The most common side effect of GENVOYA is nausea. These are not all the possible side effects of GENVOYA. Tell your healthcare provider right away if you have any new symptoms while taking GENVOYA. Your healthcare provider will need to do tests to monitor your health before and during treatment with GENVOYA.
ABOUT GENVOYA • GENVOYA is a prescription medicine used to treat HIV-1 in people 12 years of age and older and weigh at least 77 lbs who have never taken HIV-1 medicines before. GENVOYA can also be used to replace current HIV-1 medicines for some people who have an undetectable viral load (less than 50 copies/mL of virus in their blood), and have been on the same HIV-1 medicines for at least 6 months and have never failed HIV-1 treatment, and whose healthcare provider determines that they meet certain other requirements. • GENVOYA does not cure HIV-1 or AIDS. Ask your healthcare provider about how to prevent passing HIV-1 to others. Do NOT take GENVOYA if you: • Take a medicine that contains: alfuzosin (Uroxatral®), carbamazepine (Carbatrol®, Epitol®, Equetro®, Tegretol®, Tegretol-XR®, Teril®), cisapride (Propulsid®, Propulsid Quicksolv®), dihydroergotamine (D.H.E. 45®, Migranal®), ergotamine (Cafergot®, Migergot®, Ergostat®, Medihaler Ergotamine®, Wigraine®, Wigrettes®), lovastatin (Advicor ®, Altoprev®, Mevacor ®), lurasidone (Latuda®), methylergonovine (Ergotrate®, Methergine®), midazolam (when taken by mouth), phenobarbital (Luminal®), phenytoin (Dilantin®, Phenytek®), pimozide (Orap®), rifampin (Rifadin®, Rifamate®, Rifater®, Rimactane®), sildenafil when used for lung problems (Revatio®), simvastatin (Simcor®, Vytorin®, Zocor®), or triazolam (Halcion®). • Take the herbal supplement St. John’s wort. • Take any other HIV-1 medicines at the same time.
BEFORE TAKING GENVOYA Tell your healthcare provider if you: • Have or have had any kidney or liver problems, including hepatitis infection. • Have any other medical condition. • Are pregnant or plan to become pregnant. • Are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed if you have HIV-1 because of the risk of passing HIV-1 to your baby. Tell your healthcare provider about all the medicines you take: • Keep a list that includes all prescription and over-the-counter medicines, vitamins, and herbal supplements, and show it to your healthcare provider and pharmacist. • Ask your healthcare provider or pharmacist about medicines that should not be taken with GENVOYA.
HOW TO TAKE GENVOYA • GENVOYA is a complete one pill, once a day HIV-1 medicine. • Take GENVOYA with food.
GET MORE INFORMATION • This is only a brief summary of important information about GENVOYA. Talk to your healthcare provider or pharmacist to learn more. • Go to GENVOYA.com or call 1-800-GILEAD-5 • If you need help paying for your medicine, visit GENVOYA.com for program information.
GENVOYA, the GENVOYA Logo, GILEAD, the GILEAD Logo, and LOVE WHAT’S INSIDE are trademarks of Gilead Sciences, Inc., or its related companies. All other marks referenced herein are the property of their respective owners. Version date: December 2016 © 2017 Gilead Sciences, Inc. All rights reserved. GENC0126 01/17
IN THIS ISSUE M AY/J U N E 2 0 1 7
ON THE COVER 38 He’s Omar No More
Actor Michael K. Williams of When We Rise and Hap and Leonard talks about the fight for LGBT civil rights, being saved from addiction, and losing men he loved to HIV.
40 Dawn of a New Age
Activist Cecilia Chung and actress Ivory Aquino on the rise of AsianAmerican trans women.
FEATURES 26 Just Diagnosed? Special Feature What you need to do next. Answers to your top 10 questions. Coming out as a poz Latino. San Francisco shakes it up. Tips for telling others your status. 7 ways to avoid sharing the virus.
34 Sun Rise in The East
Gay men in Singapore are People Like Us. The LGBT community rises in Taiwan, where the fight against HIV is on.
44 Balls to the Wall
How the house and ball community is taking on homophobia and HIV—showing us all how to be true to ourselves.
54 Genesis
Poz mentors in Jackson, Mississippi, have become the Brother’s Keepers of local LGBT youth.
COVER: CHRIS PIZZELLO/INVISION/AP THIS PAGE: ABC/IMAGE GROUP LA
HIVPLUSMAG.COM
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editor in chief DIANE ANDERSON-MINSHALL • SVP, group publisher JOE VALENTINO art director RAINE BASCOS senior editor JACOB ANDERSON-MINSHALL managing editor SAVAS ABADSIDIS editors at large TYLER CURRY, KATIE PEOPLES associate editor DAVID ARTAVIA assistant editors DESIREE GUERRERO, RAHEL NEIRENE contributing editors KHAFRE ABIF, MARK S. KING mental health editor GARY MCCLAIN contributing writers ALEX GARNER, ZACHARY ZANE, SHYRONN JONES creative director, digital media DAVE JOHNSON interactive art director CHRISTOPHER HARRITY online photo and graphics producer MICHAEL LUONG front end developer MAYRA URRUTIA traffic manager KEVIN BISSADA manager, digital media LAURA VILLELA senior manager, integrated marketing JAMIE TREDWELL managers, integrated marketing GRETA LIBBEY, CASEY NOBLE junior designer TEDDY SHAFFER coordinator, integrated marketing RYAN WEAVER senior director, ad operations STEWART NACHT manager, ad operations TIFFANY KESDEN director of social and branded content LEVI CHAMBERS branded content producer LENNY GERARD editor, social media DANIEL REYNOLDS senior fulfillment manager ARGUS GALINDO operations director KIRK PACHECO production and office manager HEIDI MEDINA production services GVM MEDIA SOLUTIONS, LLC
HERE MEDIA chairman STEPHEN P. JARCHOW ceo PAUL COLICHMAN cfo/coo TONY SHYNGLE managing directors LUCAS GRINDLEY, JOHN MONGIARDO executive vice presidents BERNARD ROOK, JOE LANDRY senior vice presidents GREG BROSSIA, CHRISTIN DENNIS, JOE VALENTINO vice presidents ERIC BUI, STEVEN CAPONE ADVERTISING & SUBSCRIPTIONS Phone (212) 242-8100 • Advertising Fax (212) 242-8338 Subscriptions (212) 209-5174 • Subscriptions Fax (212) 242-8338 LOS ANGELES EDITORIAL Phone (310) 806-4288 • Fax (310) 806-4268 • Email editor@HIVPlusMag.com SOUTHWEST EDITORIAL OFFICES 43430 E. Florida Ave. #F PMB 330, Hemet, CA 92544 • Phone (951) 927-8727 Email support@retrogradecommunications.com or editor@HIVPlusMag.com FREE BULK SUBSCRIPTIONS FOR YOUR OFFICE OR GROUP Any organization, community-based group, pharmacy, physicians’ office, support group, or other agency can request bulk copies for free distribution at your office, meeting, or facility. To sign up, just log on to HIVPlusMag.com/signup to subscribe. There is a 10-copy minimum. FREE DIGITAL SUBSCRIPTIONS Plus magazine is now available free to individual subscribers—a digital copy of each issue can be delivered to the privacy of your computer or reader six times per year. We require only your email address to initiate delivery. You may also share your digital copies with friends. To sign up, just log on to HIVPlusMag.com/signup and give us your email address. NEED SUBSCRIPTION HELP? If you have any questions or problems with your bulk or individual magazine delivery, just email our circulation department at Argus.Galindo@heremedia.com. Plus (ISSN 1522-3086) is published bimonthly by Here Publishing Inc.. Plus is a registered trademark of Here Media Inc. Entire contents © 2017 by Here Publishing Inc. All rights reserved. Printed in the USA.
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MAY / JUNE 2017
50 years
on of award-winning HIV coverage.
IN THIS ISSUE M AY/J U N E 2 0 1 7
BUZZWORTHY
7 Sugar with Your Coffee?
Diabetes and HIV go hand and hand.
8 First Off the Block
New HIV test offers earlier results.
8 His Nightmare is Over
Poz Olympian is exonerated.
9 Origin of Disparities
Neal D. Goldstein on why Black gay men have higher HIV rates.
13 And the Winner is
Seattle's Kings County may be the first U.S. county to reach 90-90-90 goal.
14 Young Blood
Young gay and bisexual men see rising rates of HIV
TREATMENT/TaSP 16 First Date with the Blues
Depression often tags along with a new HIV diagnosis.
17 Freshmen Meds
Some of the new HIV meds coming to a pharmacy soon are the first of their kind.
17 Cannabis Curse
After striking success treating pain and mood disorders, new study calls for allowing medical research on marijuana.
18 Time for a Change?
A new device helps you keep track of when you took your pills.
19 FirstAid Isn’t Color Blind
People of color have less access to teaching hospitals .
RESISTANCE
23 Original Gangstas
These resistance warriors prove switching meds can give you a whole new beginning
DAILY DOSE
49 Working Through It
When her partner’s omission led to her own diagnosis, one woman learned to forgive.
UNDETECTABLE
52 The Beginning of the End of Stigma?
SHUTTERSTOCK
Mark S. King explains why being undetectable could mean becoming unstigmatized.
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EDITOR’S LETTER network owned by Disney, aired a special week-long mini-series about activists from several movements (civil rights, women’s rights, the peace movement) coming together to create a successful push for LGBT rights like marriage equality. Reviews were mixed, ratings weren’t blockbuster, but I loved When We Rise! Sure, it showed (by necessity) the impact of the AIDS epidemic, and the deaths of so many of our friends and family members in the 1980s and ’90s. But, unlike films that have covered similar territory, at its core, When We Rise is a story about overcoming the odds. Its focus was not on survivors, but thrivers, including remarkable HIVpositive activists like Cecilia Chung and Ken Jones, who are still leading intersectional efforts for civil rights. Casting for these parts was pure magic, too. Transgender stage actress Ivory Aquino came out for series, making her the first out Asian-American trans actress on TV (playing Chung, who is also trans and Asian-American). Both women are first-generation immigrants, too, which should be noted at a time when immigrants are being jailed and deported. Even better: Michael K. Williams as Jones. The man whose turn as Omar— the gay Robin Hood of thugs on The Wire—made for one of the all-time best anti-heroes on TV, shows how difficult facing HIV while losing everything else around you can be. This is our Just Diagnosed issue, and I’m so glad that today HIV, is no longer the burden it once was. While it’s not uncommon to need help coping with stress and depression when you first learn of this news, HIV is now a manageable chronic medical condition not unlike diabetes. Most Americans diagnosed with HIV will live long, healthy, happy, and successful lives—often with partners and children who remain HIV-negative. With current treatment options, you can lower your viral load to undetectable levels, which means you won’t be able transmit HIV to others. That is news to celebrate, if only because it may finally combat the stigma that has surrounded those living with HIV. The future for people with HIV is brighter than ever. And you are not alone here.
DIANE ANDERSON-MINSHALL EDITOR IN CHIEF EDITOR@HIVPLUSMAG.COM
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MAY / JUNE 2017
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BRADFORD ROGNE
EARLIER THIS Y E A R , ABC, the TV
buzzworthy
JOSH MAHONEY/FLICKR
B E C AU S E H I V- P OS I T I V E P E O P L E now have life spans
akin to their non-poz peers, they have to deal with the same morbidities relating to age; such as osteoporosis, heart disease, and diabetes. In fact, one in 10 people living with HIV also have diabetes. Researchers have found that diabetes develops at an earlier age in people living with HIV than in other populations. A surprising figure emerged from a study published in BMJ Open Diabetes Research and Care, an open-access journal on diabetes. After analyzing data from both the Medical Monitoring Project and the National Health and Nutrition Examination Survey, researchers found that the prevalence of diabetes in HIV-positive adults was actually 10.3 percent. That’s 3.8 percent higher than in the general population. Less than 4 percent of poz people with diabetes have Type 1, while 52 percent had Type 2, and 44 percent had unspecified diabetes. While age and obesity increase the risk of diabetes, the new data suggests HIV-positive people are likely to develop Type 2 diabetes at a younger age, even if they aren’t obese. Low-grade systemic inflammation may be an underlying factor. According to researchers, HIVpositive people who developed diabetes had significantly higher baseline levels of two inflammatory markers (including high-sensitivity C-reactive protein) than those who didn’t develop the disease. Additionally, strategies aiming to improve insulin sensitivities were shown to be less effective among HIV-positive people in prior studies, making monitoring and managing diabetes among the HIV-positive even more critical. According to the World Health Organization, there were 422 million people living with diabetes in 2014. The disease is a major cause of blindness, kidney failure, heart attacks, stroke, and lower limb amputation. Around 1.5 million people died of diabetes in 2012.
THE 10 PERCENT RULE A startling number of people with HIV also have diabetes.
— DAV I D A R TAV I A
HIVPLUSMAG.COM
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buzzworthy that they are straight or heterosexual, but engage in anal intercourse with another man. We would call that some level of misclassification, where the reported data do not match reality. Just asking someone their sexual identity is not the best marker for high-risk intercourse that can lead to HIV. The better marker is just asking, “Have you had male partners in your lifetime?” But even that does not necessarily arrive at the risk because you could have had male partners and engaged entirely in oral sex and have a negligible risk for HIV. HOW DOES THIS RELATE TO RACIAL DISPARITIES?
If you are Black or African-American, you face more stigma in your community for disclosing that you are MSM [a man who has sex with men]. Do we see this increase in HIV risk among Black MSM compared to White MSM because they are more promiscuous? Well, no. In fact, based on the work by Greg Millett’s group, you see that Black MSM have even fewer partners than White MSM. We’ve accounted for all these underlying risk differences between the groups, and we arrive at this: that there really is something different between the racial groups here. We posit it is related to the concept of a social sexual network. If you are a Black man, [race] may effect the size of the potential number of other men that you could have sex with. If your pool of men is smaller, then it’s a lot easier for HIV to move around. You may even be having less sex—[but] because you have a much smaller pool of available men to have sex with, it makes HIV a lot easier to [acquire]. THE CENTERS FOR DISEASE CONTROL AND PREVENTION PREDICTS THAT ONE IN TWO BLACK GAY AND BI MEN WILL BECOME HIV-POSITIVE IN THEIR LIFETIME.
LIFE IN BLACK AND WHITE
ONE SCIENTIST EXPLAINS WHAT DATING NETWORKS HAVE TO DO WITH HIV. N E A L D. G O L DST E I N , PhD, M B I , an epidemiologist
with Philadelphia’s Drexel University School of Public Health and Newark, Delaware’s Christiana Care Health System, examines sexual behaviors, drug use, and HIV. We recently talked with Goldstein about his work, and why Black gay men have higher rates of HIV than White gay men.
WHY ARE THE STUDIES YOU DO SO IMPORTANT?
Health departments, when they allocate funds, they often rely on data that are obtained from population-based surveys. SO, WHAT’S THE PROBLEM WITH THOSE RESULTS?
When you ask questions that are potentially stigmatizing, such as, “Do you engage in high-risk sexual behavior?” people will tend to under-report that. Someone may say 8
MAY / JUNE 2017
It’s still a shocking statistic, even if you ignore the racial component of it, just the burden among gay men having HIV. We need to stop just saying, “Oh, it’s a behavioral difference.” We’re not saying that the racial difference is based on being more promiscuous or using more drugs. We’ve accounted for any differences in the number of sex partners and drug use in our analyses. [But] we don’t have good enough data to describe the sexual networks, and I think once we can get down that road, then we can do a much better job of really intervening. We can target public health funds specifically into these networks.
WHY DO PEOPLE—EVEN WITHIN THE COMMUNITY— BELIEVE BLACK GAY MEN ARE MORE PROMISCUOUS, DESPITE STUDIES SHOWING THAT’S SIMPLY NOT TRUE?
A lot of it is just to do with the media, in a way, and how the media positions messaging. If you just talk to the average straight person out there, their impression would be that gay men have exclusively anal sex every time they bump into each other, right? [But] anal sex probably happens only 20 percent of the time. It’s mostly oral sex, which confers a very negligible risk. A 2016 STUDY REVEALED 70 PERCENT OF STRAIGHT PEOPLE DON’T THINK ANAL SEX BETWEEN MEN AND WOMEN CAN TRANSMIT HIV.
Wow. This clearly demonstrates a gap in education and how people learn about sex. But when educators ignore reality, perhaps we should not be so shocked to hear statistics like these. Maybe it’ll be a generational thing and eventually those arcane ideas will die out.— JA M
The World’s Fastest HIV Test? A research team has created HIV detection technology unlike anything we’ve ever seen. T H E D I G I TA L AG E has spawned tremendous innovation in all markets, so it was just a matter of time before it benefited HIV testing—and it has, in a big way. Researchers from the Spanish National Research Council (Consejo Superior de Investigaciones Científicas or CSIC) have developed a biosensor that can detect HIV in someone’s blood as soon as 7 days after they seroconvert. It also produces results within five hours of testing. With this kind of early detection, people who are newly diagnosed could get treatment much sooner, thus limiting the disease’s progression. Most HIV tests aren’t able to find the virus in blood until a few weeks after it has entered the body, but the new chip from CSIC uses gold nanoparticles to target an antigen on virus particles called p24 (rather than targeting the virus itself ). There are over 2,000 copies of the p24 protein on the HIV virus, but researchers had to find the correct method to detect them. “We were looking for ultrasensitive methods for biological detection,” lead CSIC researcher Javier Tamayo tells Plus. “In
this journey, we had many ideas—many failed, others were not robust enough. This technology leaves ‘the label-free’ fashion, and uses a sandwich immunoassay. Two antibodies enhance selectivity. The label, the gold nanoparticle is [both a] mass and optical label at the same time. So it was like one plus one equals two.” Silicon micromechanical structures and gold nanoparticles were chemically modified with specific antibodies that bind to p24. The chip traps the p24 protein between the modified silicone and gold structures. The combination of these structures creates a signal that amplifies each other, leading to easier detection. The chip may also be used for early detection of some cancers, but, according to Tamayo, that’s a bit trickier. “We need to discover cancer biomarkers that predict the beginning of the disease,” he explains. “Once discovered, our technology is able to detect traces in our blood. So we are collaborating with oncologists to start clinical assays of some biomarkers, [but it’s] still not approved.” The new biosensor is able to detect p24 at very low concentrations (up to a hundred thousand lower concentrations than other tests). That enables earlier diagnoses and treatment, which can have dramatic long-term impacts on health outcomes. Tamayo and his team also hope the new technology will be distributed in developing countries. “If we manage to reduce costs of the assays, and the technology works in non ideal conditions, the hope is [to speed up diagnoses] in developing countries, where many lives can be saved since antiretroviral therapy is given at the beginning of infection,” Tamayo says. “This is particularly important for infants from mothers with AIDS.” Currently, the technology is licensed to a spin-off company to develop and seek Food and Drug Administration approval, which Tamayo and his team hope to have within five years.— DA
IT’S OVER! JOAN COSTA/CSIC COMMUNICATION; AP PHOTO/MARTIN MEJIA (DARREN CHIACCHIA)
NIGHTMARE FINALLY ENDS FOR POZ OLYMPIC ATHLETE. DA R R E N C H I ACC H I A ’s nearly decade-long legal nightmare is finally over. The gay Olympic medalist has been fighting charges for allegedly violating Florida’s HIV disclosure law. The equestrian was injured during the 2008 Olympic trials, when he was thrown from his horse and suffered traumatic brain injury, which negatively impacted his ability to participate in his legal defense. In 2009, after reportedly attempting to file charges against Chiacchia in both New York and Kentucky, a former lover filed suit in Florida, alleging that Chiacchia had failed to disclose his HIV status prior to engaging in a sexual relationship with him. Chiacchia was charged with a felony, but the case was dismissed after a judge ruled that Florida’s legal definition of sexual intercourse didn’t include acts between two men, and thus Chiacchia couldn’t be charged with failing to inform his partner prior to intercourse. (Florida’s state law defined sexual intercourse as involving the coupling of male and female organs). That decision was later overturned by the 5th District Court of Appeals in 2013. Now, Florida’s Assistant State Attorney, Tim McCourt, has dropped all charges against Chiacchia, telling the court, “In the light of the totality of the evidence it is reasonable to believe that the victim learned” of Chiacchia’s status “at a time earlier than he has stated.”
Darren Chiacchia rides ‘Better Do It’ during the equestrian dressage competition of the 2007 Pan American Games in Rio de Janeiro
In his written statement, McCourt pointed to inconsistencies between testimony by the alleged “victim,” a doctor, and other witnesses as reason for dropping the charges. Chiacchia has become an activist in the nationwide effort to appeal or modernize HIV criminalization laws, many of which fail to take scientific facts into consideration. —JACO B A N D E R S O N - M I N S H A L L HIVPLUSMAG.COM
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AP PHOTO
EMPIRE STARS TARAJI P. HENSON AND JUSSIE SMOLLETT JOIN MAC’S VIVA GLAM CAMPAIGN RuPaul was the first to do it. Followed by others including Elton John, Christina Aguilera, Miley Cyrus, Nicki Minaj, and Lady Gaga. And now, Taraji P. Henson and Jussie Smollett (a former Plus cover star). Some of these stars are so famous, you don’t need to know their full names to know who we’re talking about. That’s the power of celebrity. And that’s the power that MAC Cosmetics has been utilizing to fuel their Viva Glam campaign for over 20 years. Viva Glam is a charity campaign which benefits the MAC AIDS Fund—and every cent of each Viva Glam product sold goes to the fund, which helps women, men, and children living with or affected by HIV or AIDS. Started by the founders of the company, Frank Angelo and Frank Toskan, in 1994, the MAC AIDS Fund’s mission to bring help and support to the most marginalized and neglected people and communities affected by HIV. The fund provides things like safer sex products, therapy sessions, HIV-testing kits, and homemade meals. This new Viva Glam campaign features the two aforementioned stars— Henson and Smollett—of Fox’s hit TV series, Empire. The ’90s-themed campaign features Henson and Smollett, dressed in matching outfits, dancing around adorably to Salt-N-Pepa’s 1993 hit single, “Shoop.” Smollett has long been an outspoken activist and advocate for those living with HIV, and was happy to join in and help the cause. “One lipstick literally
provides one rapid oral HIV test, 14 HIV tests for pregnant mothers, 254 condoms to prevent HIV infection,” Smollett told Teen Vogue about the impact of MAC AIDS Fund. In another cute promo for the campaign, in which Smollett is interviewing Henson, she says of the company, “MAC is all races, all ages, all sexes, all sizes, all people.… I think the best part of the Viva Glam campaign is that all of the money, when you buy this [lipstick], helps someone living with HIV or AIDS have a better life.” —DESIREE GUERRERO HIVPLUSMAG.COM
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BUZZWORTHY
Control Issues One of the most populous counties in the nation now has an HIV-positive community that is almost entirely undetectable.
T
he largest county in Washington state, King County is both home to Seattle and the 13th-most populous county in the entire nation. The county just reached a major HIV milestone. And they did it years ahead of schedule. A report produced jointly by Public Health-Seattle & King County, and the Infectious Disease Assessment Unit of Washington State Department of Health, shows that King County may be America’s first major metropolitan region to achieve the World Health Organization’s “90-90-90 by 2020” goal. As a way to eventually eliminate HIV and AIDS, the hope for all U.S. cities is to have 90 percent of residents who are HIV-positive know their status,
90 percent of those who know they’re poz on antiretroviral therapy, and 90 percent of those on ART virally supressed. Part of both an international initiative from UNAIDS and America’s National HIV/AIDS Strategy, the 2020 plan is sometimes called “AIDS-free by 2020,” because these efforts would dramatically reduce cases of AIDS. For example, in New York (which is one of the country’s leaders on the 2020 plan) the goal is to reduce new HIV infections from 3,000 to 750 or fewer per year, and reduce by 50 percent the rate at which New Yorkers diagnosed with HIV progress to AIDS. But, Seattle and King County just beat them to it. “King County continues to be a global leader in public health,” King
County Executive Dow Constantine told reporters in a statement. “The progress we’ve made toward ending AIDS in our community is the result of decades of hard work by our staff, strong community partnerships, and state and federal funding. We will continue to work together to end this epidemic in our region once and for all.” A major part of the county’s strategy was their health department’s work to make HIV testing easily accessible and routine, especially for those at high risk. Another priority was to provide outreach and assistance to people living with HIV who might not have access to the care they need. The county also reached out to elected leaders, academic partners, and the Washington State Department of Health to help achieve these goals. Their efforts paid off. “We have a lot to be proud of, but at the same time, now is not the time for complacency,” says Dr. Matthew Golden, director of King County’s HIV/ STD program. “Our success with HIV is incomplete and potentially reversible. Rates of other sexually transmitted diseases, like syphilis and gonorrhea, are rising. And funding has not kept pace with increases in syphilis, which, coupled with increases in and complexity of cases, has forced us to reduce the intensity of some of our outreach efforts.”— DA
YEP, KIDS THIS AGE ARE HAVING SEX When the Centers for Disease Control and Prevention revealed its latest report on newly diagnosed HIV infections in the United States—the HIV Surveillance Report 2016—it showed new HIV diagnoses have decreased among Black, Latinx, and White folks. Good news, right? But, the rates have risen, once again, among young gay and bi males ages 13-14, and among young men ages 24-29. Reflective of the fact that HIV-positive folks are living longer, the number of people living with HIV in the U.S. has reached an all time high at over 950,000 people. In 2015, men who have sex with men had the highest number of new diagnoses. About 26,000 men who have sex with men became HIV-positive that year. Around 3,000 people acquired HIV through heterosexual sex. And an additional 1,400 new cases of HIV happened through injection drug use. Dr. Perry N. Halkitis, professor of Global Public Health, Applied Psychology, and Medicine at New York University, says that data about those teenage boys and young gay and bi men who are becoming HIV-positive is hard to come by. So is a definitive cause. 14
MAY / JUNE 2017
“The period of adolescence and young adulthood is one of exploration for all, including young gay men,” Halkitis says. “But for young gay men, the risk of HIV is much more likely than for their heterosexual male peers. Recent documented increases in HIV at younger ages for gay men may be due to many factors, including but not limited to sexual debut at a younger age, misinformation about risk, lack of same-sex [sex] education, and barriers to accessing condoms and PrEP.” As Dr. Laura Kann, chief of CDC’s SchoolBased Surveillance Branch, told an audience at the 2016 International AIDS Conference, another reason is the fact that “the transmission risk for receptive anal sex is 17 times higher than [for] vaginal sex.” Teen boys having insertive sex have a significantly lower risk than those on the receiving end of anal. —SAVAS A B A DS I D I S
PHOTO CREDIT
HOWARD IGNATIUS/SHUTTERSTOCK (SEATTLE), SHUTTERSHOCK (KID)
AND THEIR HIV RISK JUST GOT HIGHER.
CHILL
B Y D AV I D A R TAV I A
DON’T LET HIV STIGMA KEEP YOU FROM ENJOYING SEX STIGMA IS A MAJOR SOURCE OF SEXUAL DYSFUNCTION, BUT IT DOESN’T HAVE TO BE.
SHUTTERSTOCK
L E T ’ S B E F R A N K : It is human
instinct to want sex. But to enjoy sex requires something else: feeling free and uninhibited—a mental state you can only access without the fear of judgment. As a gay man with an iPhone, I am well-versed with the type of verbiage on hookup apps, so I’ve seen plenty of judgement and I’ve realized, if there’s one thing that keeps us all from entering a place of enjoyment, it’s shame. It never ceases to amaze me how much the world shames people who like having sex.
A friend of mine still struggles with personal shame around his HIV status. He discovered he was positive in his mid-20s and felt he needed to completely change his perspectives on sex because of it. Once he became HIVpositive he felt he needed to either stop liking sex or stop having it altogether— as if not enjoying it would reverse time, and ultimately the virus itself. Even though he’s on treatment and undetectable, his attitude towards sex is completely different than mine. He’s enslaved by stigma. For many people with HIV, stigma’s insidious influence often starts just after diagnosis, with a game of solitary I call “What If?” Z What if no one finds me sexy now? Z What if people think I’m “dirty?” Z What if people think I’m a bad person? Z What if I’m undateable? This is a dangerous game to play because it easily devolves into “I Am.” Z Z Z Z
I am not sexy anymore. I am dirty. I am a bad person. I am undateable.
When we let stigma seep into our lives, it eventually changes what we
know to be true. Sooner or later, we forget how to enjoy the most basic pleasures in life—from laughter, to relationships, to food, and yes, to sex. The truth is that undetectable means untransmittable. Once your viral load is in check you can’t transmit the virus through sexual encounters. So to hell with stigma! If we let HIV stigma keep us from enjoying sex, we’re allowing a lie to control the truth. Everyone deserves pleasure—you, me, your idiot neighbor who fills the garbage can up too high—everyone! Being afraid of having sex, much less being afraid of enjoying sex, isn’t going to end stigma. But you know what will? Looking it directly in the face. Stigma is a coward. When you stand up to it, it will run away. There’s nothing wrong with enjoying sex, so long as you and your partner play safely. Condoms are sexier than STIs (which aren’t prevented by being undetectable or using PrEP) and nothing is sexier than knowledge. With knowledge comes freedom, and with that comes permission to enjoy the things we once deprived ourselves of. Yes, I’m talking about sex again. HIVPLUSMAG.COM
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TREATMENT / TASP
IT’S NOT JUST THE BLUES
HIV and depression often come as an item, especially for those newly diagnosed.
16
MAY / JUNE 2017
chronic condition can have on their lives, as well as the social stigma that remains attached to the virus. A meta-analysis of previous studies, published in PLOS Medicine last year, revealed that nearly 15 percent of adults and 26 percent of adolescents living with HIV said that depression, anxiety, or the feeling of being overwhelmed sometimes kept them from taking their meds as prescribed. Providing mental health care can improve adherence to medications, which greatly impacts overall health outcomes—and HIV prevention. Social stigma makes it even harder for those living with HIV to find mental health support, which is why it’s important for HIV treatment providers to supply that care or help their patients connect with other providers. This February, the federal Substance Abuse and Mental
Health Services Administration and Health Resources and Services Administration Center for Integrated Health Solutions released the report The Case for Behavioral Health Screening in HIV Care Settings. It argues that HIV providers should evaluate the mental health care needs of paitents and it offers resources for doing so (including screening questionnaires). “Integrating care for mental disorders and HIV is feasible,” Collins told CROI attendees. But capitalizing on the potential, “means making the screening and treatment of mental disorders a normative part of HIV care.”— DAV I D A R TAV I A Don’t wait, reach out for help when you need it. Connect with your HIV services provider, or call Project Inform’s HIV Health InfoLine (800-822-7422). The latter can help you find a support group near you and can also answer questions online (visit bit.ly/2m8yNgJ).
RYAN MELAUGH/FLICKR
If HIV treatment programs would implement better care for depression and other mental health issues, they would likely see improved outcomes, Dr. Pamela Collins of the National Institute of Mental Health reported at the Conference on Retroviruses and Opportunistic Infections earlier this year. A 2015 report, published in AIDS and Behavior, noted that up to 65 percent of those with HIV experience depression or apathy. These rates are over four times higher than in the general population. Of course, those dealing with chronic health conditions often experience depression. And, as Collins notes, the relationship between mental health issues and HIV works in both directions. Mental health can be a risk factor in who becomes HIV-positive. Those who are recently diagnosed with HIV are also at risk for depression as they learn to adjust to the impact a
FOUR NEW HIV MEDS COMING SOON Researchers reported on upcoming HIV treatment at CROI.
ANTIBODIES RULE: According to NAM’s AIDSMap, two long-acting monoclonal antibodies—CytoDyn Inc.’s PRO 140 (the drug Charlie Sheen says is keeping him undetectable) and Theratechnologies’ IBALIZUMAB (see pg. 25)—are successful in preventing HIV from entering human cells. Both have completed Phase III trials and just await Food and Drug Administration approval. These antibodies represent a new class of drugs and offer new treatment options for those who’ve dealt with antiretroviral resistance. FOR THOSE JUST DIAGNOSED: Gilead’s new integrase inhibitor, BICTEGRAVIR, reduced viral loads as well as dolutegravir (brand name, TIVICAY) in a Phase II clinical trial of the treatment naïve. Integrase inhibitors are the most widely prescribed as the first treatment for those just diagnosed with HIV and those who never started treatment before. Bictegravir is taken once a day, doesn’t interfere with oral contraceptives or a common hepatitis C drug, and it works better on drug resistant strains of HIV than other meds. The next clinical trial of Bictegravir will test a singletablet regimen, reported AIDSMaps’ Liz Highleyman. CHOLESTEROL CURES: Also in Phase III, a new nonnucleoside reverse transcriptase inhibitor (NNRTI) medication from Merck was shown to reduce HIV viral loads as well as a boosted protease inhibitor for people who are just starting treatment for the first time. The drug, DORAVIRINE, has an advantage because it has fewer neuropsychiatric and physical side-effects, and it lowers bad cholesterol in the body.
RED, WHITE & GREEN?
ICON PHOTO SERVICES/FLICKR (DOCTOR); SHUTTERSTOCK (CANNABIS)
As more states legalize marijuana use, researchers might finally get access.
The latest Gallup Poll shows that one in eight adults in the U.S. use marijuana, even more so in the West where six states have legalized recreational, not just medical, use. Medical cannabis— now legal in 28 states and Washington, D.C. with a doctor recommendation—has long been recognized for its ability to reduce chronic pain and improve executive function in the brain. So why has the federal government continued to prosecute those who use it—and prevent researchers from investigating the plant’s other medicinal uses? Because, marijuana is still classified as a Schedule 1 drug like heroin and ecstasy. Even though it has little in common with those drugs, it is still classified under federal law as having a high potential for abuse, making it unavailable for scientific study. However, a new report by the National Academies of Sciences, Engineering, and Medicine dissects how cannabis impacts those who use it as medicine—and calls for a reclassification of marijuana, cannabis, and other cannabinoids so they can be used in medical research. The report highlights people living with multiple sclerosis who have seen a reduction in muscle spasms and chemotherapy patients who have experienced less nausea and vomiting as a result of taking cannabinoids. Add these heartfelt testimonies to research indicating that Medicare prescriptions for opioids and other meds dropped in states with legalized medical marijuana, and there’s more support than ever for investigating the plant’s medical uses.
Unfortunately, Attorney General Jeff Sessions has voiced the Trump regime’s intention to ramp up prosecution of those using recreational pot, even in states where it has been legalized. Worse, the administration seems unlikely to reclassify the drug for research when doing so would also reduce penalties for using it recreationally.— DA HIVPLUSMAG.COM
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TREATMENT / TASP
CAN PREP ACTUALLY HELP KNOCK OUT STIs?
Innovative new product tracks when your prescription bottle was last opened.
Over 125,000 Americans die each year because they didn’t take their medications as directed, according to The American College of Preventive Medicine. That’s a scary fact, especially for those who take multiple prescription medications at different times during the day, as well as those who take opioids for pain (which are easy to overdose on). For people living with HIV, antiretroviral medication works best when the user strictly adheres to their medication regimen. But brain fog can often lead to forgetting which pills you’ve already taken. An innovative new product is designed to help solve this issue: TimerCap, which has a built-in LCD timer that is activated whenever the cap is screwed onto a prescription pill bottle. A sensor activated LCD display begins counting the time since the cap was replaced, like a stopwatch. When the cap is removed again, the display shuts off and the timer resets to zero (with no alarms to program). Not only does this new technology help you keep track of when you last took your meds, it also alerts you if someone else has opened your prescription bottle. Both child-resistant caps and easy twist versions are available, and TimerCaps come in a wide variety of sizes to fit almost any medication container (just tell them which pharmacy fills your prescription). Bonus: there’s a new line of TimerCaps designed specifically for medical cannabis containers.— D E S I R E É G U E R R E R O 18
MAY / JUNE 2017
PrEP use has been linked with an increased risk of sexually transmitted infections, but one new study shows that regular screenings could reverse that equation. Presented at the annual Conference on Retroviruses and Opportunistic Infections, this study shows that PrEP, combined with regular STI screenings, actually reduces the transmission of both HIV and other STIs among gay and bisexual men by up to 40 percent. A joint effort by the Centers for Disease Control and Prevention and the Rollins School of Public Health at Emory University, the study shows that even with significant reductions in condom use, PrEP and twice-yearly STI screenings could dramatically decrease transmission rates of Chlamydia and gonorrhea among gay and bi men over the next decade. Increasing screenings to four times a year didn’t dramatically impact their effectiveness, so once every six months may be sufficient. Although the CDC already recommends that PrEP users be screened for STIs semi-annually, lead author Dr. Samuel Jenness of Emory’s epidemiology department, says making sure providers are aware of these guidelines is key. “Right now, there’s a tremendous amount of [diversity] in terms of how the STI testing is being performed by these clinicians” he says. “We have some suggestions that the guidelines aren’t being adhered to with respect to STI testing.” The CDC has launched efforts to educate healthcare providers on the importance of providing PrEP users with routine STI testing. They even set up a provider hotline (855-HIV-PREP). PrEP users can also educate their own providers and request regular STI screenings. According to the CDC, sexually active, HIV-negative gay and bisexual men, and transgender women should get screened for STIs every three to six months.— D G
COURTESY TIMERCAP; SHUTTERSTOCK (CACTUS)
NEVER FORGET WHEN YOU TOOK YOUR MEDS
ROUTINE SCREENINGS COULD DROP RATES UP TO 40 PERCENT.
SEPARATE BUT NOT EQUAL
RYAN DEARTH
How teaching hospitals fail people of color.
A recent study, published in the International Journal of Health Services, suggests people of color don’t have equal access to academic medical centers. Researchers from Hunter College of The City University of New York, Boston Medical Center, and Harvard Medical School looked at who is receiving care at teaching hospitals (including their own institutions). AMCs offer some of the best research-based and specialized care in the country. Historically, they’ve been seen as a haven for minorities, the uninsured, and those with Medicaid; by offering access to cutting edge care, and being legally required to serve the disadvantaged. But, the recent study found New York City’s AMC patients were more likely to be older, White, and privately insured. In fact, White residents in the
city were three times more likely than Blacks to receive care at a teaching hospital. Surprisingly, in Boston, patients were more likely to be younger people of color (though most of them also had insurance). What’s at the root of this apparent racial segregation? Several factors seem at play. New York City has the nation’s largest public hospital system. According to the New York City Health and Hospitals Corporation, nearly 70 percent of their patients are on Medicaid or are uninsured. Those patients represent communities more likely to turn to emergency rooms for healthcare. Since many academic medical centers don’t have public ERs, these patients are less likely to frequent AMCs. In New York, public hospitals are also more likely to be located in underserved communities, and geographic proximity impacts where people get medical care. Unfortunately these hospitals rank poorly for quality of care, according to a 2016 Centers for Medicare and Medicaid Services report. Boston has only one public hospital, making that city’s AMCs more likely to serve minority patients, but “the results were not so encouraging for Boston either,” Roosa Tikkanen, the
lead author of the study, told Modern Healthcare. Now a policy analyst at the University of Massachusetts Medical School, Tikkanen said if researchers excluded Boston Medical Center—a hybrid academic medical center and public hospital—the results would’ve been quite different. That’s because Black residents were 40 percent less likely than Whites to be treated at any of the city’s other teaching hospitals. Why does this matter? AMCs enjoy significant tax breaks with the supposed trade-off that they provide care for the underserved members of their communities. Yet a 2014 New York Post article revealed that many of the nation’s biggest teaching hospitals spend less than 2 percent of their revenue on charity care (yet pay their CEOs handsomely). The authors of the recent report argue that these teaching hospitals should be held to higher standards, and forced to provide a significant amount of free care to those who need it, in order to maintain their nonprofit status. Although the racial segregation doesn’t appear deliberate, the researchers still called on academic medical centers, including their own institutions, to acknowledge that it does exist—and take steps to end it.
—RAHEL NEIRENE
HIVPLUSMAG.COM
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• PREZCOBIX® is a prescription HIV-1 (Human Immunodeficiency Virus 1) medicine used with other antiretroviral medicines to treat HIV-1 infection in adults. HIV is the virus that causes AIDS (Acquired Immune Deficiency Syndrome). PREZCOBIX® contains the prescription medicines PREZISTA® (darunavir) and TYBOST® (cobicistat). • It is not known if PREZCOBIX® is safe and effective in children under 18 years of age. • When used with other antiretroviral medicines to treat HIV-1 infection, PREZCOBIX® may help:
dihydroergotamine (D.H.E.45®, Migranal®), ergotamine tartrate (Cafergot®, Ergomar®, Ergostat®, Medihaler®, Migergot®, Wigraine®, Wigrettes®), methylergonovine (Methergine®), lovastatin or a product that contains lovastatin (Altoprev®, Advicor®, Mevacor®), lurasidone (Latuda®), oral midazolam (Versed®), phenobarbital (Luminal®), phenytoin (Dilantin®, Dilantin-125®, Phenytek®), pimozide (Orap®), ranolazine (Ranexa®), rifampin (Rifadin®, Rifater®, Rifamate®, Rimactane®), sildenafil (Revatio®) when used for pulmonary arterial hypertension (PAH), simvastatin or a product that contains simvastatin (Simcor®, Vytorin®, Zocor®), St. John’s Wort (Hypericum perforatum) or a product that contains St. John’s Wort, or triazolam (Halcion®).
○ reduce the amount of HIV-1 in your blood. This is called “viral load.”
• Serious problems can happen if you take any of these medicines with PREZCOBIX.®
○ increase the number of CD4+ (T) cells in your blood that help fight off other infections.
What should I tell my healthcare provider before taking PREZCOBIX®?
• PREZCOBIX® is always taken in combination with other HIV medications for the treatment of HIV-1 infection in adults. PREZCOBIX® should be taken once daily with food. • PREZCOBIX® does not cure HIV-1 infection or AIDS, and you may still experience illnesses associated with HIV-1 infection. You must keep taking HIV-1 medicines to control HIV-1 infection and decrease HIV-related illnesses. • Ask your healthcare provider if you have any questions on how to prevent passing HIV to other people. • Please read the Important Safety Information below and talk to your healthcare provider to learn if PREZCOBIX® is right for you.
IMPORTANT SAFETY INFORMATION What is the most important information I should know about PREZCOBIX®? • PREZCOBIX® may cause liver problems. Some people taking PREZCOBIX® may develop liver problems which may be life-threatening. Your healthcare provider should do blood tests before and during your treatment with PREZCOBIX.® ○ Chronic hepatitis B or C infection may increase your chance of developing liver problems. Your healthcare provider should check your blood tests more often. ○ Signs and symptoms of liver problems include dark (tea-colored) urine, yellowing of your skin or whites of your eyes, pale-colored stools (bowel movements), nausea, vomiting, pain or tenderness on your right side below your ribs, or loss of appetite. Tell your healthcare provider if you develop any of these symptoms. • PREZCOBIX® may cause severe or life-threatening skin reactions or rash. Sometimes these skin reactions and skin rashes can become severe and require treatment in a hospital. Call your healthcare provider right away if you develop a rash. ○ Stop taking PREZCOBIX® and call your healthcare provider right away if you develop any skin changes with symptoms such as fever, tiredness, muscle or joint pain, blisters or skin lesions, mouth sores or ulcers, red or inflamed eyes like “pink eye” (conjunctivitis). • PREZCOBIX,® when taken with certain other medicines, can cause new or worse kidney problems, including kidney failure. Your healthcare provider should check your kidneys before you start and while you are taking PREZCOBIX.®
• About all health problems. Tell your healthcare provider if you have liver problems, including hepatitis B or hepatitis C, have kidney problems, are allergic to sulfa (sulfonamide), have diabetes, have hemophilia, or have any other medical condition, are pregnant, breastfeeding, or plan to become pregnant or breastfeed. Tell your healthcare provider if you become pregnant while taking PREZCOBIX.® • About all medicines you take. Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. Some medicines interact with PREZCOBIX.® Keep a list of your medicines to show your healthcare provider and pharmacist. Do not start taking a new medicine without telling your healthcare provider. Your healthcare provider can tell you if it is safe to take PREZCOBIX® with other medicines. What are the possible side effects of PREZCOBIX®? • The most common side effects of darunavir, one of the medicines in PREZCOBIX,® include diarrhea, nausea, rash, headache, stomach area (abdominal) pain, and vomiting. • Other possible side effects include: ○ High blood sugar, diabetes or worsening diabetes, and increased bleeding in people with hemophilia have been reported in patients taking protease inhibitor medicines, including PREZCOBIX.® ○ Changes in body fat can happen in people who take HIV-1 medicines. The exact cause and long term health effects of these changes are not known. ○ Changes in your immune system (Immune Reconstitution Syndrome) can happen when you start taking HIV medicines. Your immune system may get stronger and begin to fight infections that have been hidden in your body for a long time. These are not all of the possible side effects of PREZCOBIX.® For more information, ask your healthcare provider. Tell your healthcare provider if you have any side effect that bothers you or that does not go away. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1-800-FDA-1088. You may also report side effects to Janssen Products, LP at 1-800-JANSSEN (1-800-526-7736). Please read accompanying Important Brief Summary for PREZCOBIX®.
Who should not take PREZCOBIX®? • Do not take PREZCOBIX® with any of the following medicines: alfuzosin (Uroxatral®), carbamazepine (Carbatrol®, Epitol®, Equetro®, Tegretol®, Tegretol-XR®, Teril®), cisapride (Propulsid®), colchicine (Colcrys®, Mitigare®, if you have liver or kidney problems), dronedarone (Multaq®), elbasvir and grazoprevir (Zepatier®),
Janssen Therapeutics, Division of Janssen Products, LP © Janssen Therapeutics, Division of Janssen Products, LP 2016 11/16 051975-161017
061037-161017
WHAT IS PREZCOBIX®?
ASK YOUR DOCTOR ABOUT DRUG RESISTANCE AND ONCE-DAILY* PREZCOBIX®
Wisdom inspired by real people
} B:10.75 in
T:10.5 in
S:10 in
“I’M TAKING STEPS TO HELP MY TOMORROW.” When deciding on an HIV treatment, think long term. Everyone is at risk of developing drug resistance. Once-Daily* PREZCOBIX® has a high genetic barrier to resistance, which may help. PREZCOBIX® is taken in combination with other HIV medications for the treatment of HIV-1 infection in adults.
*
ONCE-DAILY
*
PREZCOBIX.com
“Learning is part of my journey. Asking questions helps me feel more confident.”
PREZCOBIX® (prez-koe-bix) (darunavir and cobicistat) tablets
What is PREZCOBIX® used for? PREZCOBIX® is a prescription HIV-1 (Human Immunodeficiency Virus 1) medicine used with other antiretroviral medicines to treat HIV-1 infection in adults. HIV is the virus that causes AIDS (Acquired Immune Deficiency Syndrome). PREZCOBIX® contains prescription medicines PREZISTA® (darunavir) and TYBOST® (cobicistat). PREZCOBIX® does not cure HIV-1 infection or AIDS. You must keep taking HIV-1 medicines to control HIV-1 infection and decrease HIV-related illnesses. What are the most serious warnings about PREZCOBIX®? • PREZCOBIX® may cause liver problems which may be life-threatening. Tell your healthcare provider right away if you have any symptoms such as: • Vomiting • Dark (tea-colored) urine • Pain or tenderness on your right side below your ribs • Yellowing of your skin or the whites of your eyes • Loss of appetite • Pale-colored stools (bowel movements) • Nausea • PREZCOBIX® may cause severe or life-threatening skin reactions or rashes. Stop taking PREZCOBIX® and call your healthcare provider right away if you develop any skin changes with symptoms below: • Blisters or skin lesions • Fever • Mouth sores or ulcers • Tiredness • Red or inflamed eyes, like “pink eye” (conjunctivitis) • Muscle or joint pain • PREZCOBIX,® when taken with some other medications, can cause new or worse kidney problems, including kidney failure. What do I need to tell my healthcare provider? Tell your healthcare provider if you: • Have liver problems, including hepatitis B or hepatitis C • Have kidney problems • Are allergic to sulfa (sulfonamide) • Have diabetes • Have hemophilia • Have any other medical condition
• Are pregnant or plan to become pregnant. (It is not known if PREZCOBIX® will harm your unborn baby. Tell your healthcare provider if you become pregnant while taking PREZCOBIX.®) • Are breastfeeding or plan to breastfeed. Do not breastfeed if you take PREZCOBIX® because it is unknown if PREZCOBIX® can pass into your breast milk. You should not breastfeed if you have HIV-1 because of the risk of passing HIV to your baby.
Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. Some medications may prevent PREZCOBIX® from working or cause increased side effects. Do not start taking a new medicine without telling your healthcare provider. Who should not take PREZCOBIX®? • Do not take PREZCOBIX® with any of the following medicines: alfuzosin (Uroxatral®), carbamazepine (Carbatrol®, Epitol®, Equetro®, Tegretol®, Tegretol-XR®, Teril®), cisapride (Propulsid®), colchicine (Colcrys®, Mitigare,® if you have liver or kidney problems), dronedarone (Multaq®), elbasvir and grazoprevir (Zepatier®), dihydroergotamine (D.H.E.45®, Migranal®), ergotamine tartrate (Cafergot ®, Ergomar ®, Ergostat ,® Medihaler,® Migergot,® Wigraine,® Wigrettes®), methylergonovine (Methergine®), lovastatin or a product that contains lovastatin (Altoprev,® Advicor,® Mevacor ®), lurasidone (Latuda®), oral midazolam (Versed®), phenobarbital (Luminal®), phenytoin (Dilantin®, Dilantin-125®, Phenytek®), pimozide (Orap®), ranolazine (Ranexa®), rifampin (Rifadin,® Rifater®, Rifamate®, Rimactane®), sildenafil (Revatio®) when used for pulmonary arterial hypertension (PAH), simvastatin or a product that contains simvastatin (Simcor,® Vytorin,® Zocor ®), St. John’s Wort (Hypericum perforatum) or a product that contains St. John’s Wort, or triazolam (Halcion®). • Serious problems can happen if you take any of these medicines with PREZCOBIX.® What are the possible side effects of PREZCOBIX®? PREZCOBIX® may cause serious side effects including: • Diabetes and high blood sugar • Changes in body fat can happen in people taking HIV-1 medications • Immune system changes (Immune Reconstitution Syndrome) can happen in people who start HIV-1 medications • Increased bleeding can occur in people with hemophilia who are taking PREZCOBIX.® The most common side effects are: • Diarrhea • Headache • Nausea • Stomach area (abdominal) pain • Rash • Vomiting These are not all of the possible side effects of PREZCOBIX®. For more information, ask your healthcare provider. What should I know about this Brief Summary? This information is not complete. To get more information: • Talk to your healthcare provider or pharmacist • Visit www.PREZCOBIX.com to read over the FDA-approved product labeling and patient information • Call to report side effects either to the FDA at 1-800-FDA-1088 or to Janssen Products, LP at 1-800-JANSSEN (1-800-526-7736). © Janssen Therapeutics, Division of Janssen Products, LP 2016 10/16 054195-160602
R E S I S TA N C E
BY JACOB ANDERSON-MINSHALL
LOVISA WISTRAND
THIS RESISTANCE WARRIOR IS A CRUSOE DENEEN ROBINSON HAS SURVIVED ON HER WITS, BUT SHE’S NO CASTAWAY
R
everend Deneen Robinson has always been a fighter dedicated to helping others. Two decades ago, she helped family members battle drug addiction and used her own experience with homelessness to propel her into a social work program at the University of Texas. Despite the grim prognosis Robinson received when she was diagnosed with HIV in the mid 1990s, she didn’t just lay down and die. Not even when one of her lungs collapsed during a bout of pneumonia caused by the “superbug” Streptococcus pneumoniae. Even though she was forced to temporarily give up custody of her two daughters while recovering from lung surgery, she refused to stop fighting. “My doctor and I created a five-year treatment plan, which afforded me the best outlook as I looked to survive HIV,” Robinson recalls. She started on an antiretroviral cocktail of indinavir (Crixivan), lamivudine (3TC), and azidothymidine (AZT). While it knocked down the HIV, “the indinavir was causing lipodystrophy.” The redistribution of fat was a common side effect to many of the first-generation antiretroviral medications used to fight HIV. “I was also experiencing hair loss and lipoatrophy,” she says. The latter is the wasting that characterizes the end stages of the disease. HIVPLUSMAG.COM
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R E S I S TA N C E
BY JACOB ANDERSON-MINSHALL
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He learned of a clinical trial that might be able to help, and she bravely signed on. She’s now on Prezcobix and Intelence and considers herself fortunate to have something that works. “My current regimen is a nuke sparing regimen because of the risk of kidney issues associated with Truvada. For now, this regimen is working.” But, she acknowledges, “The risk of resistance is still a reality. Fortunately, the most recent medications have unique mutation markers,” which means she isn’t likely to already have a resistance to them. Once a person becomes resistant to a particular drug, they often have resistance to other medications in the same class (like all NNRTIs) even if they’ve never been exposed to those other drugs. In the past decade, Robinson hasn’t let HIV resistance hold her back from continuing to fight for herself and others. According to the Dallas Morning News, she’s been a consultant for the Centers for Disease Control and Prevention, The Well Project, and Black AIDS Institute. She’s worked as a community educator and a patient navigator for Project HOPE. Her activism has been recognized in local and national publications (including Newsweek and Dallas Voice) and honored with awards. Robinson says she received “a Lambda Legal Civil Rights Award … [for] work I did in creating and establishing a successful treatment education program in the Dallas area; one of the programs was At the Kitchen Table. The Margaret Thatcher Award was given for the work I did in creating innovative reconciliation work for the LGBT community in Dallas.” Robinson has also become a writer herself, penning two columns (“Ain’t I A Woman” and “The Privileged Gardner”), being published in The Body and POZ, and serving as an International Abstract Review Committee member for the International AIDS Society. The Reverend is now a mission coordinator for Living Faith Covenant Church, and a health and wholeness minister at The Fellowship of Affirming Ministries. She serves as the chair on diversity
and inclusion for the Human Rights Campaign’s Dallas Fort Worth Steering Committee. Earlier this year, Robinson helped spearhead a rally for the Texas Black Women Rise Up Campaign, representing The Afiya Center, where she’s “creating opportunities to respond to the reproductive justice concerns of Black women. We were in Austin for the Texas Black Legislative Caucus Weekend conducting a rally to [draw attention to] 11 harmful bills that would make it difficult or impossible for women to access reproductive healthcare in the State of Texas. We wanted to push the envelope to make the case for the negative impact these laws—if passed—would be even more harmful to the maternal health of Black women specifically.” At the time, Robinson told Spectrum News, “It is really important that women and girls, Black women particularly, understand that they have the right to have families when they want, to participate in the planning, and also that they have all the resources necessary so that they can have the kind of families that they want to have.” Those sentiments are even more important as women’s reproductive rights are under attack across the country. But it’s a different kind of resistance that Robinson wants to remind people living with HIV about. “Understanding the science of treating [HIV], understanding the medications you are prescribed, understanding your resistance risks and a commitment to adherence are key to successfully treating HIV.”
HENDRI MAULANA
Dealing with side effects didn’t strand Robinson for long. She soon became a health educator for South Dallas Health Access, worked with AIDS hospice patients at Legacy Founders Cottage, and co-founded a Dallas women’s group called At the Kitchen Table to “create an environment where women could respond to their health challenges and deal with physiological issues, [like] isolation and stigma. I taught classes on every aspect of HIV, including medications, side effect management, resistance, and concomitant health issues. Although I have moved on to another organization working with women, the group is still active.” Eventually, Robinson switched medications when other options came available. “I wanted a regimen that was less complicated,” she says, and her provider hoped the side effects would also lessen with different drugs. It wouldn’t be the last time she’d switch meds. Like many long-term survivors, Robinson has tried a number of different cocktails. “I have switched complete medication regimens more than five times,” she says It wasn’t always by choice. The HIV activist was almost permanently sidelined when she developed a resistance to her HIV medications. Robinson says hearing that she had, “developed a significant number of mutations,” almost killed her. Literally. She got the call while driving. “I was on the freeway on the way to visit a client in 2006,” she recalls. “I was shocked. I began to cry and I almost had a car wreck.” “The office staff didn’t know that I would be shocked,” Robinson explains. “She shared the info with me as if I was already aware of the news. When I informed her that I was shocked, she immediately apologized and asked if I would like to come in for a visit with my doctor.” Robinson agreed. Resistance can be frightening, because it means that certain drugs no longer work and the virus has developed defenses to the medication’s mechanism. Robinson developed a resistance to lamivudine, non-nucleoside reverse transcriptase inhibitors (NNRTIs), and most protease inhibitors. She met with her doctor and discussed her options.
PILL POPPING POLLYANNA? HOW A LONG-TERM SURVIVOR ENDED UP TAKING 30 PILLS A DAY
COURTESY THERATECHNOLOGIES (IBA BLOCKING HIV); SHUTTERSTOCK (PILLS)
REVOLUTIONARY MEDICATION FOR MULTIDRUG RESISTANCE Developed by Theratechnologies Inc, ibalizumab, is the first long-acting biologic injectable to treat multidrug resistant HIV. “It’s actually really exciting,” says Yale School of Medicine’s Dr. Brinda Emu, one of the study’s authors. She says ibalizumab, a monoclonal antibody, binds to CD4 receptors, preventing HIV from attaching. Other monoclonal antibodies have targeted CCR5, but targeting CD4 is “a completely new mechanism of action; and because of this, it has no cross resistance with any other antiretrovirals out there.” This is great news for those with HIV resistance, as building resistance to one drug can make all other drugs in that class ineffective. Emu says that “all of the other approved molecules out there are small molecules, so they are metabolized quite quickly.” But IBA is larger and has a longer half-life, making it well suited for biweekly administration. When paired with optimized antiretroviral therapy, IBA offers new hope to those with the most difficult cases of HIV, who previously had “limited or no remaining options to treat their infection,” Dr. Jacob Lalezari, of Quest Clinical Research told Plus. Phase III trial participants had been HIVpositive on average 20 years and, Emu says, “Over 50 percent had exhausted three classes of drugs, 35 percent had exhausted four classes of drugs, and 15 percent of participants had actually exhausted all antiretrovirals—meaning they were resistant to everything that’s been approved.” After a single week, IBA was already proving effective in decreasing viral loads. Researchers later “optimized” participants’ antiretroviral regimens, and those no longer susceptible to any of the HIV drugs on the market were also given a booster of fostemsavir (another new attachment inhibitor). As part of combination therapy IBA proved effective for the majority of study participants, who experienced both reductions in viral loads and increases in the number of T cells. Even better, 43 percent of study participants were able to lower their viral loads to undetectable levels, a remarkable feat given how difficult their HIV had become to treat.—JA M
Alan Andrews-Katz takes almost as many pills as the number of years the long-term survivor has been HIV-positive. The 51-year-old from Washington state takes 30-plus pills a day but still manages to retain what his husband of 16 years, Eric, calls a “Pollyanna attitude towards life.” More than three decades ago, Andrews-Katz was told he only had a few weeks to live. He’d been diagnosed with AIDS and was suffering from cytomegalovirus, an inflammation of eye. “I decided since I was going to die anyway, I would allow them to try a new drug on the CMV with the hopes that what they learned would help someone else in the future,” he recalled in 2016. The drug may have helped saved his life, but “that medication killed my kidneys.” Andrews-Katz, who was one of Plus magazine’s Most Amazing HIV-Positive People of 2016, tells us more about his experience switching HIV medications. That early treatment destroyed your kidneys; has that impacted what kinds of meds you’ve been able to take? Having end stage renal disease greatly limits the medications I can take. A majority of HIV meds are cleared by the kidneys. Since my kidneys no longer function, levels in the body can become toxic fairly quickly. Unfortunately, I can take none of the combination products such as Combivir that are currently available. This is frustrating when trying to lower the sheer number of pills I take in a week. How many times have you switched medications? The first [antiretroviral] medication I was on was AZT, 26 years ago. Since that time, I’ve been on three other regimens. The first switch was due to more effective medications being developed than AZT. (Thankfully. That medication was difficult to take for me due to the nausea and vomiting it triggered!)
Have you developed resistance to any HIV medications? I have developed a resistance to one of the medications in the second regimen (after AZT) that I was on. Luckily, I have not developed resistance to other medications. Can you describe what happened when you developed resistance? How did you realize the meds were no longer working? Increased viral load was the main indicator. I had maintained an undetectable viral load for years, however we saw a drastic increase in the numbers between testing periods. Other than what seemed to be an increase in colds, the blood work was the only way I could tell. What are you on now? Currently my regimen includes Prezista, Norvir, Intelence, and Viread. I’ve been on my current regimen for two years, with my viral load currently undetectable. Do you worry about developing new drug resistances? I greatly fear developing resistance to any part of my current regimen. As stated before, I have very few options left to me due to [kidney failure]. Unless any new drugs are on the horizon, I have only a few options I can use. Is there anything you’d like others to know about dealing with drug resistance? Be diligent with taking your medications. Starting and stopping them increases the risk of developing a resistance. If it works for you, better to keep as many options open for treatment for as long as possible. Plus, whenever I’ve switched regimens, there’s been a whole new set of side effects to deal with. It can also take some time to get used to a new dosing schedule.— JA M HIVPLUSMAG.COM
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what this means for your health and your love life. So do some research, read stuff from reliable sources. The Centers for Disease Control and Prevention, magazines like Plus, and material put together by HIV organizations are good places to start. Ask your doctors, and people with HIV, to fill in the gaps. 6 JOIN A SUPPORT GROUP. There’s strength in numbers. And sometimes you need to talk to someone who is going through the same thing you are. Someone who has been poz for 10 years has a lot to share, but they haven’t experienced what you’re going through for a long time. You need to talk with someone who’s at the same place in their journey. The first six months after diagnoses are unlike any other.
It’s OK. We’re here. This is what you need to do next. BY JACOB ANDERSON-MINSHALL
1 DON’T FREAK OUT. OK, you’re freaking out. Of course you are. It’s a normal response to learning you’re HIV-positive. But take a moment to breathe, because this news is not as bad as you think it is. I’m not trying to be trite or belittle what you are going through, but things have changed dramatically—even in the last few years. HIV is not the life-altering, or life-ending, diagnosis it once was. It is now a manageable chronic disease like diabetes. You are more likely to die of heart disease than of AIDS-related complications. You will keep living, you will keep loving, you will still have a happy life. So breathe. It’s going to be OK. 2 START TREATMENT. I know, you want some time to process, to grieve the healthy life you think you’ve lost. And that’s okay. But while you’re doing that, make an appointment, go to it, fill your prescription, and start taking it right away. This is really important: it may affect the rest of your life. Studies show that getting on treatment early can greatly improve your long-term health (in some cases, by more than 50 percent). Take advantage of the breakthroughs we’ve made. 3 GET HELP. You’re going to need help navigating this new experience, this new HIV-positive world. The amazing thing is that there are tons of organizations and peer support groups out there that are waiting to give you the assistance you need. They can help you find a doctor, figure out how to pay for your medications, and answer all the questions you suddenly need to know. 4 TELL SOMEONE. Coming out about your HIV status can be really hard, especially at first (it gets easier every time you do it). You may be afraid of how the person you are telling is going to react. Will your friends still be there when they find out you’re poz? Will your parents be disappointed? Will the guy you’re seeing break things off? When you don’t know how the important people in your life are going to react it can be terrifying. For the most part, people will probably surprise you. You’ll find that those who care about you don’t stop doing so just because you’re HIV-positive. But they may want you to reassure them by answering a bunch of HIV 101 questions. Only problem? You don’t know the answers yet. So, tell someone who doesn’t need to ask those questions, because they already have the answers. Know someone who is poz? Tell them. Or call a hotline and tell the woman who answers. You’ll feel better, and next time it will be easier. Trust me. 5 EDUCATE YOURSELF. Again, when you tell your friends and family you are HIVpositive, many of them are going to have questions. They may also believe some myths about HIV, especially about how it’s transmitted. They might fear sharing silverware with you—even though they can’t get HIV that way. Or they might just want to know 26
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7 END YOUR BAD HABITS (AHEM, SMOKERS). We’re not going to tell you to stop using drugs because they are illegal. You’re free to use your own moral compass and we won’t narc you out to the police. But, injection drugs or chemsex may have gotten you into this mess in the first place, since even taking Molly can make HIV transmission more likely. And they are bad for your health, especially now that you are living with HIV, because they are hard on the immune system. Even worse? Cigarettes, which are not as stigmatized as hard drugs but are actually more deadly. According to the American Cancer Society, each year “cigarettes kill more Americans than alcohol, car accidents, suicide, AIDS, homicide, and illegal drugs combined.” Get help breaking your addictions and leave those bad habits behind. 8 EMBRACE HEALTHY LIVING. Being HIV-positive does mean that you’ll have increased risks of some other illnesses. Watch your diet, exercise regularly, follow heart-health guidelines, and drink more coffee (but less soda). You’ll be healthier, and thus happier. 9 GO ON A DATE. Finding out you’re HIV-positive isn’t a reason to give up on love or stop dating. You are just as hot, smart, unique, and amazing as you were the day before your diagnosis; so don’t let anyone tell you otherwise. If someone’s no longer interested in going out with you once they learn your status they aren’t worthy of your time anyway. You are better than that. The right person is still out there waiting for you; and they are going to see that everything you have to offer didn’t evaporate because you’re now HIV-positive. 10 PLAY SAFE. Now that you’re HIV-positive you will have to avoid transmitting HIV to your sexual partners. But playing safe is easier to do then ever before. If your partner is HIV-negative but is taking PrEP, the one-a-day HIV prevention pill, you have less chance of transmitting HIV than if you rely on condoms. You’re even safer if you use both. There are also different positions and sexual acts that carry far fewer risks: including oral. Even better news? Once you’ve been on treatment long enough that you’ve gotten your viral load down to undetectable levels (some experts say around 6 months), you’ll have virtually zero chance of transmitting HIV regardless of whether you use a condom. Yes, zero.
SHUTTERSTOCK
LEAN ON ME
San Francisco’s POSITIVE FORCE offers hope, healing, and happiness for men living with HIV. Strut, a program of the San Francisco AIDS Foundation, is a revolutionary sexual health resource center for men, including those living with HIV. It opened its doors in 2016, with the mission of promoting the health and wellness of gay, bi, and trans men; strengthening community, and reducing the impact of HIV on San Francisco.
Strut brings together multiple programs— case management, substance use counseling, mental health counseling, and HIV and sexually transmitted infections screenings— into one convenient location. Integrating those services allows the SFAF to maximize funds and serve to up to 50 percent more people than it used to. Oh yeah, and all services are one hundred percent free. One of the most innovative resources available to poz men at Strut is Positive Force, a holistic wellness program focusing as much on mental and emotional well-being as on physical health. The program includes one-on-one wellness sessions, social events and excursions, health workshops with HIV experts, and twoday weekend retreats called PLUS (Positive Living for Us Seminars). Those weekends are, for some clients, life-altering. “It’s just amazing to see the emotional change in people from Saturday morning to Sunday evening when they leave” says Positive Force program manager T.J. Lee-Miyaki. “It might be the first time they’re in the room with other people who are HIV-positive. They realize that they’re not alone, that other people are going through similar feelings or emotions, and have similar thoughts to them, or are struggling with things like how to tell their parents. It’s powerful to see these people come in and, by the end of the weekend, they’re like, ‘You know what? I can actually get my head wrapped around this. I can see there’s a future.’” Lee-Miyaki, who has been living with HIV for 17 years, says sharing his story helps clients cope with the overwhelming anxiety they experience when first diagnosed. “That usually helps break down a little bit of a wall and a fear, because then they think, Oh, well this person has done this,” he says. Little things appear to make big differences in some of these men’s lives, as well. Lee-Miyaki started giving iTunes gift cards to clients and encouraging them to create a “happy, shiny playlist” that can lift them up when they are having bad days. It’s been a very popular addition to the program. One of Positive Force’s main goals is to offer support and coping mechanisms for men who have just learned their HIV status, Lee-Miyaki says. He recalls one 19-year-old who came into Strut right after diagnosis, “He thought his life was over, you know, that he’d never find anybody to love him.” Initially, the teenager fell into a depression, which led to dropping grades at college, and other personal issues. Lee-Miyaki has worked with the young man for over two and a half years, now, mostly in the program’s one-onone sessions. “And now he’s an A-student, he’s got a boyfriend, he sees a future for himself,” LeeMiyaki says. One life saved, many more to go. —DESIREE GUERRERO
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HIV TESTING TODAY
HIV TESTING DOESN’T HAVE TO SUCK
SHUTTERSTOCK
I GET TESTED FOR HIV and other sexually
transmitted infections every three months, if not more often. I’ve been pretty diligent about this ever since I became sexually active. But it hasn’t always been easy. In fact, it used to suck. Going to the doctor sucked. Going to the doctor as a gay or bisexual man sucked even more. Going to the doctor as a queer man who’s sexually active—and wants to get tested for HIV and other STIs—sucked the worst. Going to my college’s healthcare center was absolutely terrible. I was shamed mercilessly by the doctors there. They thought I was reckless. I was 19, getting drunk, and having sex. (I know—shocker. Who would have thought I would be getting drunk and having sex at college?) Still, I can understand why they thought I should take more precautions. What I don’t understand is why they thought yelling at me—or diagnosing me with an STI that I didn’t have—was the way to get through to me. I didn’t stop having sex, but I did start going off campus to get tested. I went to a community clinic in a rundown area in Poughkeepsie, N.Y. The clinic was visibly dirty, and home to sex workers, drug addicts—and me. The nurses there were burnt out. You could hear it in their lethargic voices and see it in the bags underneath their eyes. They were exhausted from years of positive diagnoses, and could no longer care about their patients. Being invested was too painful. I kept going—for three years—because that’s what you do. I needed to feel safe. I needed to feel in control. Still, I never got over the dread I felt going there to get tested. After college, I started working at Massachusetts General Hospital in Boston. They had a free infectious diseases clinic that I went to during walk-in hours. That’s where I met Julie, a nurse practitioner who had been working with queer men since the early ’80s. She’s knowledgeable, direct, and doesn’t judge. When she first asked me how many people I’d slept with in the past three months, I said, “It’s tacky to count.”
This has become an ongoing joke of ours. It’s something I say every time I come in. We always laugh together. She follows up, “Greater than 10?” I nod. She laughs when I tell her raunchy stories, and she remembers my partners, giving them ridiculous nicknames. “You still sleeping with Herpes Girl?” She asked me once upon entering the exam room. I was. There’s something about Julie’s direct and arguably crass language that makes me feel comfortable. Rather than dreading our appointments, I’m excited about coming in to see her. She’s the medical professional who calmed me down after I slept with an HIVpositive man without a condom. (He hadn’t been truthful about his status.) I had recently started PrEP, but it was one of the first times I had slipped up and not used a condom with a man in so, so long. The research was still out, and I wasn’t sure the HIV prevention pill really worked. Julie was the one who assured me that Truvada worked. She was the one who told me the facts and statistics about PrEP. She was the one who said, “Come in 14 days from when you were exposed. When you come in, tell the receptionist you’re here to see me, and I’ll come out and see you right away. It doesn’t matter how many people are in front of you.” She was the one who called me directly to tell me my results were negative, instead of having me call into a hotline. Julie is, hands down, the best ID health provider I’ve ever had. There are so many clueless doctors and nurses out there. Medical professionals who have no idea how the needs of gay and bi men differ from that of straight men. Medical professionals who don’t know what PrEP is or are hesitant about prescribing it. Medical professionals who shame you for sleeping with numerous partners, even when you’re having consensual, protected sex—and are asking your partner about their status. Unfortunately, the impetus is on us, as gay and bi men, to find a good doctor. I specifically go to an infectious disease clinic to get tested, because I not only find them more knowledge about STIs, but also because they’re accustomed to seeing queer men. It’s not only important when it comes to getting tested, but for all other physical and mental health issues. I see a gay therapist who specializes in LGBTQ issues and my primary care physician was referred to me by a lesbian friend who promised she worked well with LGBTQ clients. Going to the doctor doesn’t have to be a pain in the ass. Getting tested doesn’t need to be a horrifying or frustrating experience. It’s time we took charge of our health, and didn’t settle for anything less than we deserve. —ZACHARY ZANE
START HIV TREATMENT. HELP PROTECT YOUR HEALTH.
There is no cure for HIV, but find out how treatment helps make it possible to live a healthy life. See Inside
A HEALTHIER LIFE CAN START WITH HIV TREATMENT. Starting HIV treatment right after diagnosis can help stop the virus in your body. Because treatment helps lower the damage HIV causes to your immune system. Plus, doctors and scientists have found that it can help lower the risk of heart disease and certain cancers.
TREATMENT ALSO HELPS YOU PROTECT OTHERS. HIV treatment can help lower the amount of virus in your body. It can get so low, it can’t be measured by a test. It’s called being undetectable. And it helps lower the chance of passing HIV on to others by more than 90%.
TALK TO YOUR HEALTHCARE PROVIDER. Have an open conversation. When you work together it helps your healthcare provider find the treatment that’s right for you.
Watch HIV: “Treat 2 Prevent” See how staying on treatment can help protect you and the people you care about. YouTube.com/HelpStopTheVirus
STOPPING THE VIRUS CAN START WITH YOU. Here are two resources that can help.
Watch videos, share information, and see how we can all help stop the virus. HelpStopTheVirus.com YouTube.com/HelpStopTheVirus
Get the answers you need, privately, on your phone. HIVanswers.com/app
© 2016 Gilead Sciences, Inc. All rights reserved. UNBC3477 07/16
HIV TESTING TODAY they think they are invincible. The most common barriers were knowing where to get tested, getting transportation, and fears about maintaining their privacy.
5 GETTING DOCTORS TO DO ROUTINE TESTING IS HARDER THAN YOU’D THINK. Dr. Karen E. Mark, head of the California Office of AIDS, has argued that HIV testing in medical settings could replace the need for publically-funded tests. But Kyle Baker from L.A. County Public Health Department says they had trouble convincing the county’s own medical facilities to adopt routine testing. It took “years of working and negotiating with the hospital administration” to get their first hospital to opt-in.
10 Surprising Things You May Not Know About HIV Testing
1 CHARLIE SHEEN COMING OUT LED TO RECORD-BREAKING HIV TESTING. When actor Charlie Sheen came out about being HIV-positive, thousands of men and women responded to the news by getting their own HIV tests. STDcheck.com—which does remote testing for sexually transmitted infections—reported record-breaking HIV test kit sales the day Sheen appeared on NBC’s Today show.
2 HIV TESTS ARE ESSENTIAL TO STAYING HIV-NEGATIVE. HIV testing isn’t just for when you’re worried you’ve been exposed. These tests are also essential for those who don’t have HIV and want to remain HIV-negative. For example, in order to get on the HIV-prevention treatment known as PrEP, you have to first test negative and then have regular follow-up testing every few months to confirm the treatment is still working. Plenty of couples take HIV tests before moving in together, or marrying, or deciding to have a threesome. Embrace routine testing.
SHUTTERSTOCK
3 CUTTING PLANNED PARENTHOOD FUNDING REDUCES HIV TESTING AROUND THE COUNTRY. According to Texas Public Radio, when the fallout from an anti-abortion propaganda film led to Texas-wide funding cuts to Planned Parenthood, HIV prevention and care suffered dramatically. Defunding Planned Parenthood nationally would similarly impact HIV testing and efforts to stop the epidemic—including PrEP access—as well as eliminate numerous other health programs in many parts of the U.S. 4 GAY AND BI TEENS AREN’T GETTING TESTED FOR HIV. A study from the Center for Innovative Public Health Research shows that gay and bi boys and men between 13 and 24 have high-risk activities but don’t get HIV tests. Why? It’s not because
6 SADLY, PRISONERS AREN’T GETTING TESTED. Although people who are incarcerated are more likely to have HIV than the general public, most prisons don’t test all inmates. Many offer voluntary HIV tests for those coming into or leaving incarceration, but very few inmates are tested at both ends of the correctional pipeline, making it hard to track if HIV is being transmitted behind bars.
7 HIV TESTING HAS CHANGED. It used to be that you had to go into a clinic one day to take an HIV test and then wait two unbearable weeks for the results. Now, many places offer rapid, while-you-wait test results. Newer, fourth-generation HIV tests also screen for both the HIV antibodies and the p24 antigen, reducing the time one has to have HIV before it is detectable (around two to six weeks after infection). 8 YOU NEED TO TEST AS EARLY AND OFTEN AS POSSIBLE. HIV is the most virilent and infectious in the acute stage of transmission; just after it enters a new host. You want to catch the virus as early as possible to avoid transmiting HIV to someone else. Plus, research shows early interventions have wide-ranging, longterm benefits, not the least of which is that you can live as long and healthy a life as your friends who don’t have HIV.
9 TESTING HAS GONE HIGH-TECH. Columbia University researchers invented a device that attaches to a smartphone and can provide accurate HIV testing results in 15 minutes. Other companies have developed USB testing sticks and testing biosensors. 10 YOU DON’T HAVE TO GO TO A CLINIC TO GET TESTED. In addition to doctor’s offices and clinics, you can get HIV tests at your local pharmacy, at nightclubs, thrift stores, and churches.
—JACOB ANDERSON-MINSHALL
HIV TESTING TODAY
THE FUTURE OF HIV TESTING?
Breakthrough device could test for HIV and help those who are poz self-monitor their viral loads.
British researchers have created a new way of testing for HIV using a USB device, according to VOA News. In a study published in the journal Scientific Reports, researchers showed the device—which was developed by scientists from London’s Imperial College and a private company, DNA Electronics—provides results in under 30 minutes and is 95 percent accurate. Although rapid HIV tests have been adopted in parts of the U.S., costs still limit many facilities to using tests that must be sent to laboratories for analysis, which can take three days or longer to return results. This new device could help advocates test more people for less money and in a shorter amount of time. The USB device utilizes a semiconductor chip from a cell phone and only requires a small amount of blood, which is placed in a special location on the device. VOA noted, “If any HIV virus is present in the sample, this triggers a change in acidity, which the chip transforms into an electrical signal. This is sent to the USB stick, which produces the result in a program on a computer or electronic device.” Not only could this device be used in the field to test those at-risk for contracting HIV, it could be used by HIV-positive people to self-monitor the effectiveness of their treatment regimen. Recent studies show that those with HIV who are virally suppressed to an undetectable level aren’t able to transmit the virus. Regular at-home testing could eventually help alert those with HIV if their treatment isn’t working (so they can tackle resistance before it develops). “Monitoring viral load is crucial to the success of HIV treatment,” noted Dr. Graham Cooke, a researcher at the department of medicine at Imperial College London. “At the moment, testing often requires costly and complex equipment that can take a couple of days to produce a result. We have taken the job done by this equipment, which is the size of a large photocopier, and shrunk it down to a USB chip.” This new breakthrough could make monitoring HIV as simple as checking blood sugar levels for people with diabetes. In addition, Cooke said, the device would be very useful in remote areas, such as in subSaharan Africa, where medical facilities and personnel are not always accessible. But don’t expect to find this at your local pharmacy anytime soon: It’s still in development and will need to get Federal Drug Administration approval.—DAVID ARTAVIA
THE HOME COURT ADVANTAGE
DNA ELECTRONICS (USB); CORBIS (BLOOD TEST)
Getting tested for STIs has never been more comfortable.
GETTING TESTED AT a clinic can be embarassing and stressful, which is why OraQuick—the first at-home HIV test, which you can buy at your local pharmacy—is popular among certain groups. Now a new test, from GetTested.com, allows users to test at home for 13 different sexually transmitted infections. This new and improved test is also perfect for non-monogamous couples looking for a regular testing option without having to make repeated trips to a doctor’s office. The 13-test panel screens for Chlamydia, gonorrhea, hepatitis C, herpes simplex 2 (HSV-2 or genital herpes), HIV 1 and 2, HPV, Mycoplasma, syphilis, trichomoniasis, and Ureaplasma. The kit comes with an easy instruction manual, finger prick test, urine sample collection kit, oral mouth rise kit, anal swab, and pre-paid FedEx shipping to return your lab samples. Results are 99.9 percent accurate, which is just as reliable as traditional clinic-based testing methods. Even better? You can get results in five days or less through a private confirmation call with a physician or through a confidential HIPAA-compliant online portal. You’ll pay for the anonymity and ease, though. Unlike your local free clinic, this 13-panel test costs $399. —DA
infections), and reduce stress, loneliness, and depression. But being positive does mean you’ll need to protect your intimate partners. 8 Do I have to disclose? There are a number of reasons to tell your sexual partners that you have HIV. If you’re using a condom, have an undetectable viral load, or know your partner is on PrEP, it may seem irrelevant. However, numerous states have HIV disclosure laws and in some of them it doesn’t even matter whether your partner becomes poz or not. Know what the laws are in your state and protect yourself by disclosing if you need to.
11 Things You Need to Know About HIV If you’ve just been diagnosed, these are the top things you need to know moving forward with what will still be a long, happy life. 1 How did I get HIV? This is a question you’ll ask and get asked exhaustively, and the bottom line is that you likely acquired the HIV virus by coming in contact with the blood or semen of someone who is HIV positive. The most common modes of transmission include unprotected anal or vaginal sex and sharing needles. 2 Is it my fault? No. HIV isn’t some kind of karmic punishment. It is a virus that is communicable and therefore travels between people. Certain types of activities may increase your risks, but we wouldn’t blame a diabetic for their diabetes even though Type 2 diabetes is preventable.
LEESONEMMA/FLICKR
3 Does being HIV-positive mean I also have AIDS? Absolutely not. Confusing HIV for AIDS or using them interchangeably is one of the most frequent mistakes made. In the U.S., the majority of people living with HIV will never develop AIDS, the most advanced stage of HIV disease. AIDS is its own diagnosis and many clinicians prefer “stage three HIV.” 4 Am I going to die? Yes, but probably not anytime soon, and not because of HIV. The truth is, with treatment, people with HIV can live as long and as healthy of a life as those without it. You’re more likely to die from a car accident than from HIV. There can always be complications, just as there are with any chronic condition (like diabetes, for example), and you will
be susceptible to the same medical conditions that affect all people. But, as long as you take your meds you’ll likely live a long healthy life with HIV. 5 When should I start treatment? Right now. Ideally you should begin treatment as soon as possible, like the day you get your positive result. Early HIV treatment has been shown to provide long-term advantages. Even if you don’t have symptoms, without treatment your infection can compromise your immune system and make the HIV harder to treat. The sooner you’re on treatment, the sooner you can lower your viral load and even reach undetectable levels where it becomes highly unlikely for you to transmit HIV. 6 What is “Treatment as Prevention?” HIV medication reduces the amount of virus in an HIV-positive person’s blood. The goal is to reduce your “viral load” to a level so low it’s considered “undetectable.” Largescale studies on both gay and straight couples in which one was HIV-positive and the other was not, have yet to document a single case of transmission while the HIVpositive person is undetectable. 7 Do I have to stop having sex? Absolutely not. In fact, most doctors will encourage you to continue having a healthy sex life. Orgasms can be wonder drugs in themselves: They help you sleep, boost your immunoglobulin levels (which fight
9 Can I still have kids? Yes. Medications can make it so there is less than a 1 percent chance of transmitting HIV between mother and child. A positive father can have his sperm “washed.” You may need to find a specialist who deals with HIV and fertility but you still can conceive. If you’d prefer to adopt or foster parent, there are protections for HIV-positive parents-to-be that ensure you can’t be discriminated against in many areas. 10 Will being HIV-positive affect my ability to undergo gender confirmation surgery or take hormone therapy? No. A study published in 2006 in The Journal of the American Medical Association compared surgery data for both HIV-positive and HIV-negative patients and found that the two groups had the same level of complications. While some HIV medications can impact hormone levels, there are HIV treatments that won’t interfere with your hormone therapy. Work with your doctor to find the right medication regimen to control your HIV, stay on your hormones, and enable you to live in your authentic gender. 11 How do I answer when people ask, ‘Can you get HIV from...’? Start by telling them how it’s not transmitted. The virus cannot survive outside the body, so you cannot get it from toilet seats, band aids, or shared dishes. It’s not transmitted in your saliva, so you can’t get it from kissing or from spit. It’s not transmitted in sweat or urine. You can’t get it from a swimming pool, hot tub, sauna, mosquito or rodent bites, tattoos, or ear/body piercings. Only blood, semen, vaginal fluids, and breast milk carry HIV in quantities concentrated enough to transmit it to another person. One of these fluids from an HIV-positive person must come in contact with mucous membranes or damaged tissue, or be injected into the bloodstream of another person, before HIV transmission can possibly occur. HIVPLUSMAG.COM
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An expert’s guide to disclosing your HIV status and keeping your relationships. BY MARIO CASAS 30
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SHUTTERSTOCK
AFRAID OF COMING OUT POZ? HERE’S HOW
Deciding whether or not to disclose your HIV status can be difficult, and the right decision may differ from person to person and from situation to situation. It’s natural to feel overwhelmed and uncertain about telling people. Unfortunately, even though there have been huge improvements in the public’s awareness of HIV, stigma remains. Keep these five Ws (who, what, where, when, why) in mind when you consider telling others about your diagnosis: 1 WHO DO I NEED TO TELL? If you’ve had unprotected sex with a partner, it’s important to let them know they may be at risk and should get tested. Regardless of whether they decide to get tested, by disclosing this information, you raise their awareness about HIV. Some states also mandate disclosure prior to sex—find out the laws in your area. When it comes to telling family members and friends, it’s important to be selective. Keep in mind that some people may not ready to hear the news; and others won’t be able to understand it. Disclosing can make your relationship even stronger; but if your relationship has been rocky in the past, the news might further strain it. 2 WHAT DO I WANT TO SAY AND WHAT CAN I EXPECT IN RESPONSE? Follow your instincts—and not your fears— when it comes to telling someone. Take into account how much information that person has about HIV and AIDS and shape what you tell them accordingly. It’s a good idea to role-play and practice telling someone before actually doing it. Keep in mind those who love you may have negative reactions simply because the news may frighten or worry them. That may make disclosing to a sympathetic stranger easier, so consider telling an HIVpositive friend or acquaintance first. It’s also important to remember that if you don’t get a positive response, you are not being rejected; the virus is being rejected. Help them learn more about the disease and give them time to process. If they still reject you? It’s time to meet someone who won’t. 3 WHEN SHOULD YOU TELL SOMEONE YOU’RE HIVPOSITIVE? If it’s a sexual partner who may be at risk, the when is usually the sooner the better. But it may actually be better to wait when telling some family and friends—at least until you have a better sense of what it all means. 4 WHERE IS THE BEST PLACE TO HAVE THIS CONVERSATION? Private locations are best, and you’ll want some place quiet enough so you can hear each other. The reaction of the other person can be hard to predict so you may also want someplace where you’ll feel safe no matter how they respond. 5 WHY AM I TELLING THIS PERSON? This is your private health information, and once it’s out in the open it can impact your everyday life—at work, in public, and at home—so think about your purpose for disclosing the news. If you are not ready to tell anyone at all, that’s Okay too. But try to avoid isolation. Find a local support group, like AIDS Services Foundation Orange County’s Healthy Relationships program, where you’ll receive encouragement, care, and additional information. Healthy Relationships is a five-week, small-group program that helps men and women living with HIV develop skills to facilitate their decisions about whether to disclose their status to family, friends, loved ones, and sexual partners. It also helps participants build healthier and safer sexual relationships long-term. Even though you may feel overwhelmed, vulnerable, and uncertain about your life and your future—you need never alone on this journey.
MARIO CASAS is an HIV prevention specialist with AIDS Services Foundation Orange County. For more information on ASF and its Healthy Relationships program visit ocasf.org.
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WHAT I LEARNED ABOUT COMING OUT
There’s a community to support you— you just have to find it. I have been HIV-positive for 16 years. As a Latino man with strong family ties, it was very difficult for me to not only reveal to them my diagnosis but also the fact that I was gay. In the Latino community, in general, we have our own views toward sex and sexuality and tend to be more discreet and more conservative. So it wasn’t only about the diagnosis but also about being gay in a machismo culture, where masculinity defines so many aspects of our lives. As a way of coping with something they couldn’t understand, my family responded first with silence and then with blame, shaming me for my lifestyle and my HIV-positive status. With so much resentment and fear tearing us apart, I moved away from my family in Houston. In Southern California I found support and a safe haven in the AIDS Services Foundation and its project, RADAR (Rendering Access to Diseaseprevention Advocacy & Retention). RADAR focuses on helping bisexual and gay Latino men by providing vital HIV services and counseling. It was the first time in nearly 10 years that I felt a sense of community. I made new friends and established bonds with others who had a similar history. I received medical care and food pantry services, and counseling that I feel truly changed my life. Without ASF, I most likely would have been unable to do what I did, which was to reconcile with my family—building even stronger relationships with them than before— and letting go of the resentment and fear. In fact, I’m now the go-to man in the family for advice and information about sex, HIV, and coming out. With an overwhelming feeling of 32
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Ways toAvoid Transmitting HIV BY JACOB ANDERSON-MINSHALL As far as viruses go, transmitting HIV is actually a bit difficult. You are most at risk of passing the virus on to someone else when you are first diagnosed. Fortunately, there are many ways to avoid transmission. Here are the top seven. 1 Become undetectable: Stay on HIV medication and get your viral load down, and you won’t have to worry about transmitting HIV to anyone. 2 Disclose when you need to: If your sexual partner will be at risk, they need to know. (But not before you have your first coffee date.)
gratitude and trust in ASF, I started volunteering at the AIDS Walk and recently became certified to perform HIV tests. I will also be volunteering as a counselor at RADAR, helping the Latino community prepare for, and better respond to, the lives and needs of the men within it. I have survived a devastating HIV diagnosis. I have survived cancer. And I have survived the storm of losing family support. Now, living a healthy life (clean and sober), I see how important it is to have the courage to seek help and accept the resources offered by organizations like ASF. It profoundly changed my life. No, actually, it saved my life. For more on RADAR, an ASF satellite project in Santa Ana, Calif., focused on HIV intervention and prevention among young Latino men, visit OCASF.org. — D A N I E L G A R Z A
3 Don’t share needles: Whether you use needles for legal drugs (like hormone shots) or illegal street drugs, reusing needles is risky business. 4 Play safe: ask your sexual partners to use condoms or take PrEP (a one-pill-a-day HIV preventative treatment). 5 Take advantage of lower risk activities like oral sex—and have your partners either spit or swallow (stomach acids kill HIV). 6 Chose the right lubricant (avoid two ingredients: polyquaternium and polyquaternium-15, both types of polymers, which can increase the risk of HIV transmission). 7 Don’t panic over a little blood. HIV must enter the body directly via mucous membranes or the bloodstream in order for transmission to occur. Generally, those membranes need to be open via cuts or abrasions. Abrasions in the rectum and vagina are common during sex, when semen can enter the bloodstream. But exposing those abrasions to significant amounts of blood is rarer.
COMING OUT ON THE REZ & OFF
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Bryan Kills Crow is coming out in Indian Country, so it’s easier for others to do so as well. A CCO R D I N G T O T H E Centers for Disease Control and Prevention, 19 percent of Native Americans living with HIV are unaware of their status, a rate higher than the 13 percent who are unaware in the general population. That may be due to lower testing rates, but also because, in the tightly-knit, extended-family Native world everyone knows each other’s business and stigma has a siginificant potential to disrupt one’s life. “In our Native—aka Indian—community,” Kills Crow says, “we still have that stigma that people [are] afraid of getting tested. So we explain how important is.” Kills Crow knows first-hand how stigma breeds fear. “When I was first diagnosed being HIV-positive back in 2009, I thought my life was pretty much over with,” he admits. “I thought about a relative [who was living with HIV] back home on the reservation, the Standing Rock Sioux Tribe. What shit he had to deal from friends and relatives. Hearing about the terrible things people would say or do to him. I did not want myself to be in that place or situation.” Kills Crow, who was attending school in Utah when he was first diagnosed, moved to be near family in Minnesota, but, as he wrote in a World AIDS Day essay for Native News Online, “Being [there] was a big challenge for me. I was hearing and seeing acts of violence to Native [people] and Two Spirits living with HIV/AIDS. I had to make an effort to surround myself with a good support system and stay focused on the positive things.” He threw himself into a new mission, helping “reconstitute the Minnesota Two Spirit Society.” “Two Spirits” include gay, lesbian, bisexual, transgender, or gender-variant individuals. In Native American communities, they are often the most at risk of becoming HIV-positive. According to the Centers for Disease Control and Prevention, from 2005 to 2014, the number of new HIV diagnoses increased a whopping 63 percent among gay and bi American Indians and Alaska Natives (CDC’s language for the indigenous people of America). Four years ago, Kills Crow moved again, relocating to Michigan, where some of his siblings live. He began to come out about living with HIV. “It got lonely keeping it to myself,” he explains. “I wanted to people hear my hurt and pain, what I went through to get where I am at today.” That’s what led him to write for Native News, but it was a decision he questioned almost immediately, “After the article went viral online I pretty much shook myself and said, ‘What hell did you just do?’” In retrospect though, Kills Crow says, he’s happy he did it, particularly because of the supportive response he got, “I was glad to hear someone cared,” he admits, “especially when it come from family and relatives. That made it special.” And despite his initial trepidations, Kills Crow continues to speak publicly, even being interviewed on TV for a World AIDS Day celebration. “It took courage for me speak out,” he acknowledges. “[But] speaking out and having others listen to my story was the best thing for me. By me speaking
I was healing myself, and maybe I was healing others out there as well.” As an activist, Kills Crow helped establish the Grand Rapids, Michigan-based celebration of National Native HIV/ AIDS Awareness Day. “After serving as a volunteer for [the Grand Rapids] World AIDS Day planning committee was over and done,” Kills Crow recalls, “I thought maybe the Red Project [a local HIV organization] could help me organize a local NNHAAD event. I also brought up my idea to the attention of the Grand Rapids Pride Center. Before that I reached out to the Native American community for help. When it was all coming together [we] saw something special that was happening. I started building a bond between non-Native and Native communities. They were willing to work together.” Kills Crow was the 2015 keynote speaker for the local National Native HIV/AIDS Awareness Day. Since then he’s become a full-fledged HIV educator, talking with other poz Native Americans about the effectiveness of the newer one-aday HIV medications. He’s proud that “Most tribal communities and most families are embracing their Native positive children.” But Kills Crow doesn’t forget that “stigma and fear are lurking in the back” and could rebound. HIV awareness, prevention, and treatment can all help Native American Two Spirits live longer, healthier lives. Kills Crow adds, “We are still resilient like our forebears.” LGBT and poz Native Americans aren’t going anywhere.—J A M HIVPLUSMAG.COM
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The country’s first gay web series offers a rare look at queer life in the Southeast Asian republic.
t ’s r e f r e sh i ng to see a series so well done that it not only invites viewers to deeply care about the characters, but encourages the audience to educate themselves about what’s happening in another part of the world. People Like Us does that and more. The web series, which just released its first season on Here TV (owned by Plus’s parent company, Here Media), follows four gay men living in Singapore whose lives interconnect in unique ways. It is the first web series developed in Singapore about gay men, and producer and director Leon Cheo is aiming to introduce their stories to a mainstream audience. “We pushed a lot of envelopes,” Cheo says. “It was multifaceted. We wanted real locations, real bars, real bathhouses. A lot of [global] gay representation is not Asian. I’m glad we made a film primarily about gay people in Asia and their stories. They have different ways of coming out, different cultures—being gay in South Korea or Japan is completely different [than in Singapore].” The series was co-developed with Action for AIDS Singapore, a charity and non-governmental organization that promotes HIV awareness and education. Since wrapping the first season, People Like Us has been screened at festivals around the world to high acclaim, recently winning Best TV Short Drama at 34
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BY DAVID ARTAVIA
hemant ashoka (rai) observes two fellow actors in a sexy scene.
the Independent Television and Film Festival in Vermont last fall. When Action for AIDS approached Cheo in 2015 to help develop the series about Singapore’s gay and bi community for GayHealth.sg, it soon became a passion project with much higher stakes. “The first thing I said was ‘We cannot have a scene where a character gets tested,’” Cheo recalled. “We didn’t want it to be too moralistic. I didn’t want to see the character going through the emotions of getting tested and, you know, that usual scene we see a lot. And they agreed. We wanted to create something that didn’t preach to the audience. I thought about these characters, I drew from my own experience.”
COURTESY CHEO PICTURES (BOTH PAGES)
behinD the scenes ( from toP): leon cheo with crew; cheo with actors irfan kasban (left) anD Josh crowe (riGht); (bottom): cheo with crew.
Filming at real gay clubs and bars in Singapore, the characters also use local slang, such as “AJ,” which means “gay.” The title itself, “People Like Us” or “PLU,” is akin to how “queer” is used in the West. The series highlights the universal experiences gay men deal with, including sex, coming out, sexual health, and HIV. At the end of each episode, representatives from GayHealth and Action for AIDS talk about the issues raised in the episode. “We had a private screening for the [local gay] community,” Cheo said. “People laughed and really connected with the characters. The response has been really good. One of the things we sort of hoped would happen is to provoke a little controversy with one of our characters. His name is ‘Ridzwan,’ which is a very Muslim name. There isn’t talk about religion in the show, but we wanted to inspect religious people, how they deal with being gay …. I think they needed an intersection as well.” Gay sex is still technically illegal in Singapore. Although the law is kept on the books to appease conservatives, it’s rarely enforced. Still, as a result of the policy there is a great deal of censorship restricting positive portrayals of LGBT people in the news and in film and on TV. Cheo says that’s a major reason why the team chose Internet streaming. People Like Us is available now on the Here TV network, YouTube, and Amazon Prime. While there are LGBT rallies, like “Pink Dot,” in Singapore, they are rarely covered by press until a major company like Google is there, Cheo says. In that case, when the event gets bigger, the news “can’t help but cover [it]. With the Internet, you can’t hide that an event supporting LGBT rights was attended by more than 28,000 people!” HIVPLUSMAG.COM
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remained fatal and terrifying. What’s worse is that gay men [were] always linked with dying of HIV/AIDS. Growing up with such stigma and fear, I decided to become [an] HIV specialist as well as an advocate, hoping we can change the face of the epidemic, the atmosphere of the society, and also give our younger generation a stigma-free future. I think the gay community started to acknowledge what my team has done and I truly hope we can have more engagement from the community.
Growing acceptance of LGBT people hasn’t stopped the rise of HIV among Taiwan’s gay men. BY ALEX GARNER Taiwan is witnessing a groundswell of support for LGBT equality. Gay hookup apps like Hornet are fueling the LGBT emergence by helping more gay men connect than ever before. Last year, 80,000 people marched at Taipei’s Gay Pride parade, calling for Taiwan to legalize same-sex marriage. Unfortunately, the growing cultural acceptance of LGBT rights hasn’t changed the fact that gay men in Taiwan continue to be disproportionately impacted by HIV. Stigma is an ongoing barrier for testing and treatment, and the high costs puts PrEP out of reach for most. We recently spoke to Stephane Ku, a Taipei doctor and advocate who is working to improve gay men’s health in Taiwan. He and his team conduct clinical trials, and offer HIV testing, counseling, and PrEP services. Ku also cofounded the organization HIV Education And Research Taiwan (HEART), which provides information, promotes testing and PrEP, and works to minimize HIV stigma. Taiwan is seen by many as one of Asia’s most progressive countries. How does the Taiwanese society respond to the LGBT community? For the past decade, the attitude towards LGBT [people] from the general public has changed slowly, yet greatly. 36
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The majority of the society, especially the younger generation is now accepting [of the] LGBT community. Besides, we see more and more LGBT-friendly industries and companies appearing in the Pride [march] each year. How would you describe the average gay man’s relationship to HIV in Taiwan? HIV remains a major health problem to Taiwanese gay men. There are around 2,200 new cases of HIV diagnosed each year. More than 60 percent of the new cases were MSM; more than 70 percent were less than 35 years old. However, most gay men don’t have enough awareness—let alone knowledge—of this viral infection, which can be treated and prevented quite easily. How do you describe the benefits of PrEP to men in your community? PrEP can serve gay men as an alternative to condoms in terms of HIV prevention without compromising intimacy or sexual pleasure. Also, it provides gay men in a receptive role during sexual intercourse an opportunity to protect themselves. What made you decide to be an advocate around HIV and gay men’s health? How have people responded to you being so open? I was born in the ‘80s when HIV/AIDS
Gay sex is still taboo all around the globe. How have men in Taiwan been able to embrace and celebrate their sexuality? This is a really interesting question. Actually, Taiwan is blessed to have diverse historical, racial, political, cultural, and even religious backgrounds. Gay men embrace influences from Japan, Thailand, as well as the Western countries. Such openness to different cultures really gives a wonderful shape of our own gay culture in Taiwan. How do men in Taiwan demonstrate resiliency in the face of homophobia? Homophobia has never been showing a sign of extinction here, unfortunately, despite the wonderful LGBT Pride we have in Taiwan every year. In fact, while the whole world is watching Taiwan possibly [becoming] the first country in Asia to legalize marriage equality, our advocate groups and legislators are under tremendous attack and pressure from some religious groups. I think the key component of resiliency is speaking out for your own rights, and solidarity from the community. People may have different opinions regarding PrEP or recreational drugs, but when it comes to homophobia or stigmatization issues, you can see people come out with such solidarity. That’s surely very encouraging and touching.
ANGUS FANN
celebrating gay pride in taiwan
What do you see as the greatest challenges facing gay men in Taiwan? I would say negligence and a lack of proper knowledge about HIV is definitely one of the biggest challenges we are facing in Taiwan today. Panic over HIV is really bad, but ignoring its ongoing epidemic in Taiwan is definitely not good [either]. Mental health problems, such as depression and substance use, are becoming really important [issues] that require more attention and resources.
P ep + HIV treatment + Condoms
#PlaySure
BE HIV & STI Sure If you are HIV negative, PrEP is a daily pill that protects you from HIV. If you have HIV, treatment can keep your virus level undetectable and decreases the chance of passing HIV to your partners. Condoms add more protection against HIV and help prevent Sexually Transmitted Infections. PLAY SURE: Call 311 or visit nyc.gov/health to design the right HIV and STI prevention combination for you.
Bill de Blasio Mayor Mary T. Bassett, MD, MPH Commissioner
TAYLOR JEWELL/INVISION/AP
MICHAEL K. WILLIAMS mesmerized us as Omar on The Wire, charmed us as Chalky on Boardwalk Empire, and still has us coming back for more as half of the titular Hap and Leonard. So expertly crafting another gay character on TV (real-life, HIV-positive veteran Ken Jones on When We Rise) was smooth sailing for the actor and activist. But the reasons why he took this role was way more personal than many realize. B Y D I A N E A N D E R S O N - M I N S H A L L
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W H E N O M A R L I T T L E WA L K E D into a room, it was like a force of nature had entered. He commanded the space. Omar wasn’t your average thug. He was the Robin Hood of gritty Baltimore, robbing drug dealers and sharing the wealth with his community. The biggest surprise? Omar was also gay. Played by actor Michael K. Williams in HBO’s hit crime drama The Wire, Omar was a hard but honest, dark-skinned dude, with steely eyes and a giant scar running down his face. No Hollywood special effect, that scar was courtesy of Williams’s own troubled past. Even surrounded by a stellar cast, Williams stood out, imbuing the violent criminal with a gentle humanity that made him unlike any character we’d seen on TV. In just five seasons, Williams created one of the most enduring anti-heroes of all time, a character so authentic that he earned praise from none other than the former President of the United States, Barack Obama. Omar felt real to Williams too, real enough to give the actor an identity crisis and a drug addiction when the curtain went down on The Wire. That may have made it easier for Williams to play his most recent role, as real life HIV-positive veteran and activist Ken Jones in When We Rise. Jones too struggled with questions of identity and addiction. Williams credits Reverend Ron Christian of the Irvington, New Jersey, Christian Love Baptist Church with helping him kick his cocaine habit. “Every body called him Reverend Ron,” recalls Williams. “Yeah, Reverend Ron Christian helped me kick a lot of habits.” Christian, who died in 2015, ran a welcoming
church, open to everyone—Blacks, Whites, straights, gays, bisexuals, trans people, sex workers, addicts, the homeless, and people living with HIV were all included. “That type of community acceptance and love— at it’s core, that’s when the healing really begins to happen,” Williams says. “If I want to help to heal my community, I don’t want to alienate the people who are ill in my community. It doesn’t work. I have to embrace everything, everyone, that is broken in my community. Because the people who are the most in pain are the ones who are closest to the solution. That’s where the problem is—the people who are most in pain. So you have to go there, right? So, Rev. Ron was that kind of guy. There was never any judgment. He liked the broken people. If you had issues this was the place for you because this is what he felt he was called to do. So, it was that type of acceptance and non-judgement, that kind of attracted me to the congregation.” That experience may have paved the way for some of the moving scenes in When We Rise. Williams—as Ken Jones—struggles to find his own spiritual home, moving between churches, fighting for LGBT inclusion, and renewing a relationship with God he once thought lost during the early years of the AIDS crisis. “I look at his life and as someone who is like a real American hero,” says Willilams. “And it’s real honest for me to tell you that. This is a man who has been on the front lines for our country in the military. He’s a darkskinned Black man that was in the Navy at a time when it was probably not that easy to get in the Navy. He hid his homosexuality while doing all of that, and then to have all that taken from him. Then to say to himself,
across: michael k. williams poses for a portrait in new york. above: scene from when we rise
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‘OK, I’m gonna turn over a new leaf and move to San Francisco and start a new life for myself.’ Only to be hit by the tidal wave and the front lines of HIV/AIDS, and having to fight that front line battle with the whole meds and everything, having to get proper healthcare. First of all, you have to identify what the damn thing was. You know, that’s four wars. That’s four battles that he’s fought face to face: civil rights, gay rights, HIV, the good old American military. It’s like—and to see him now—to have all that history behind his eyes, and to be in that presence it’s really humbling.” Jones indeed has a calming, hopeful spirit about him. It may be why years later, he began officiating weddings for same-sex couples. It is an extension of his activist years of caring for LGBT youth and investing in kids to get them off the streets. Like the actor who portays him, Jones hasn’t always been the man he is today. “I spent a good deal of time preparing myself to die with dignity and grace,” Jones recalls of the 1980s. “I had bought a lovely house in San Francisco right across the street from the ocean so I could hear the water. And, I’m laying there with my hands crossed and I’m waiting to die. They had initially told me I had about 30 days.” Jones was one of many gay and bi men (as well as transgender and cisgender women of color) who were told they had mere days or weeks to live thanks to the AIDS complications ravaging their bodies. And yet, year after year, they outlasted all of their friends and lovers—and then struggled to start over and begin to actually “live” again. “So, for about five years I sat there waiting to die,” Jones recalls. “And then slowly this thought kind of dawned on me. You know, maybe I’m not going to die. So, then I had to go through this whole kind of re-shifting of my life. From preparing to die to starting all over again, and having most of my support network and contacts dead. It was kind of starting over again with absolutely nothing.” Like many men in his situation, Jones had nursed a partner as he passed away, then was evicted from their home by homophobic and distant relatives. It wasn’t an uncommon story in the 1980s and ‘90s, as many same-sex couples didn’t have wills or legally shared property. Jones was out of a house, out of a job, all his belongs gong away in the back of someone else’s moving truck. Alone and sick and fighting the Veterans Affairs for better HIV medication, Jones says his situation went from bad to worse. “In the middle of my preparing to die was the Rodney King verdict, which was significant in my life. That is when I actually broke down, and I guess you would say I started experiencing post-traumatic stress disorder from Vietnam 25 years later. I didn’t feel comfortable leaving my house. I couldn’t cross the street. If I heard a car coming I would duck and hide underneath another car. I felt totally insane, and it was as though my contract with America had expired.” The VA finally came through and specialists helped him cope with the trauma he was experiencing. “The VA helped me through a very critical period of my life,” Jones says, “as did religion and spirituality. The day that I was told I was going to die soon, about an hour after the doctors left the office, two friends of mine came by. And they
said, ‘God told us to come here and tell you that you’re not gonna die, he’s gonna save your life, and when you get out of here you have to go to church with us.’ So, you know, I’m there, I’m told I’m dying, and I was also going through detox. So, my head is swirling and here are these two people talking about God, and I said, ‘Holy shit. I really lost my mind here. This is the end.’” But when Jones got out of the hospital, he did start attending church with the folks who saved him. He says, “after a couple of years I started feeling better and better. And every day I felt a little bit better than the day before. And now, after 30 years of each day being a little bit better than the day before, I’m doing great.” The former sailor says his doctors now celebrate his vitals each visit. “They don’t know that when God heals you, he doesn’t target one part of you. He heals you and makes you new—and you start all over again,” Jones says. Faith and antiretrovirals are a potent cocktail. Still he knows, for many people with HIV— especially the gay ones—“it is the church that is unsafe. But it’s the spirituality and the direct connection to God, without going through a religion or having to do anything—a private relationship you have with God [that heals]. You know how usually we put pictures of people we really love on our refrigerator door? I believe that God has my picture on his refrigerator door. He loves me that much. This is such a crucial discussion right now because some people think that God hates gay people. And so I want to have a very honest conversation, because that’s not true. I know he loves me. He loves me so much that he gave his only begotten son for me.” Williams too thinks he lucked out with faith, and with Reverend Ron. “Who’d of thought he would [offer] a friendship and a brotherhood that would go far outside the church walls?” Back in Hollywood, Williams has played memorable roles from Boardwalk Empire’s Albert “Chalky” White to Leonard Pine—another gay, Black Vietnam vet— on Sundance’s Hap and Leonard. Once, years ago, when asked if he had any concerns about playing a gay character, the actor said no, he didn’t, but, “man, I got a problem with not eating.” This role, as Ken Jones in When We Rise, the seminal journey of several LGBT rights activists who came together and survived decades of setback and successes, was a very different thing for Williams. “My reasoning for wanting to take this particular role is way more personal than me being afraid of not eating,” Williams insists. “I would have done this for free. It was an honor to tell these stories.” The Brooklyn, New York, raised actor has been surrounded by LGBT folks since he made his professional debut as a dancer at 22, and his support for and inspiration from early LGBT activists like Ken Jones is ongoing. The HIV epidemic too has impacted him profoundly “My nephews, Michale Frederick Williams and Eric Williams, both are deceased. This is my blood. They
COURTESY SUNDANCE (HAP); ABC (WE RISE); HBO (THE WIRE)
across: scene from when we rise. above: scenes from williams’ career (clockwise from top): hap and leonard with james purefoy; with phylicia rashad in when we rise; with michael kevin darnall on the wire
were two gay men that I loved to death. My best friend who taught me the streets in Brooklyn was a lesbian, Robin Henry. She’s still alive. I danced in the house music world, danced background for Crystal Waters. So, this particular role, it was never about the money for me. I would have done it for free. And with honor. Great honor. I was humbled and grateful to be able to tell a story of an American hero like Ken Jones.” Williams reveals little of his own personal life. “I mean, my personal life is boring,” he says. “Your personal life ain’t nobody’s business. Ain’t nobody checking out for that. I mean I ain’t. I’m on the road. There’s a lot going on in my life that’s positive, and right now if any relationship thing [were] to happen, it would happen if I find the right person. But right now I’m just chillin’. I let love find me.” Today, Williams is hard at work on a criminal justice reform documentary, his series Hap and Leonard is gaining a cult following, and When We Rise, which aired in March, is streaming at ABC.Go.com and will soon be on DVD and Blu-ray. (Cleve Jones’s book— When We Rise: My Life in the Movement, a partial inspiration for the series—is now available, too). In an industry where African-Americans are just beginning to get mainstream recognition (and are still subjected to colorism in casting), Williams has carved out a niche that few character actors have been able to achieve. Jones too, cut his own path as a Black man in a gay culture that struggles with racism even today. When he first hit San Francsico, traditional gay establishments were sometimes hostile to people of color, even as AIDS began to ravage both the Black and gay communities. “It was very very complicated,” Jones recalls. “It had a bunch of layers. I think the one that is most important in the beginning of this epidemic, it seemed as if the gay White men and the establishment wanted to establish their own sandbox. And there were women and there were people of color who were saying, ‘We’re experiencing this just like you are. And we all have skills and stuff to bring to the table to talk about this epidemic.’ And so we had to literally fight in order to participate.” HIVPLUSMAG.COM
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to the hospital. And at the core of his crime and whatever he was getting arrested for, mental illness was at the core of that. It would be nice to see more facilities other than just the hospitals and the fucking prisons to send people from the community who have issues. More counseling-based programs. Things where people can go to get help because there’s so much stress and so much trauma in the community.” Jones and Williams may be exceptions, men who have battled addiction, racism, and depression, but who have made it to middle-age with relative resiliency. Jones admits, though, that “African-American men have it especially hard, because it’s an hourly occurrence [to confront racism]. If you step into an elevator, you see a woman change her purse to another arm— you know that dwells on you, you feel unwelcome. If you cross the street and you hear that ‘tick tick’ sound of doors locking just because you’re crossing the street, it beats you up. And I can tell you, I’ve been called the [N-word] on every street in the Castro. But I’ve also been called a faggot on every street in the Castro.” He laughs at the ridiculousness of it all. The timing of When We Rise, on the precipice of a new period of HIV activism and intersectional resistance in the face of the Trump regime, seems judicious. “It’s a good time to tell a story about what people can do when we band together and fight for what we believe in,” Williams says. “Because that’s what they were doing back then. They wouldn’t give up. That’s how we got HIV medicine.” He’s also got a new “big brother,” he says, in Ken Jones. “Because of this journey he took with me and allowed me to take with him. I’m really blessed to have had that experience. He’s a very kind and beautiful human being.” The actor doesn’t think about how many people are watching his portrayls of these powerful Black men, the gay Black men that is: Ken or Hap or Omar. “As an artist once I do it, I don’t worry about who it touches,” Williams says. “One thing I am concerned about is the one kid that may see this story and maybe not know about their history, and feels some sort of relief or pride in their sexuality or whatever their difference they may be having in their community.”
michael k. williams on boardwalk empire
HBO MEDIA
Today, as Black and Latinx queer and trans folks lead the way in some activist circles like Black Lives Matters, Jones’s advice is prescient. “In the early days, we kind of made a mistake,” he says, of the 1980s. “You know, we didn’t have a workbook or a guide that we could just check off things. And one of our misunderstandings in the beginning was, if there were eight to 10 people at the decision-making table, our thinking was since they’re all gay White men, two or three are gonna have to give up their seat for diversity.” He says he sees the flaws in that thinking now, and what he learned seems particularly timely with activists of all colors fighting back against White supremacy and political oppression. “Now, these White gay men they haven’t done anything wrong, they haven’t failed, they’re at the top of their game, they’re doing well, and they’re being asked to give up their seats. How crazy is that? So some people left with a whole bunch of anger and resentment towards the people coming in taking those seats. Along the way, we realized it’s a lot more healthy if we add more seats to the table, as opposed to asking people to get up and surrender their seat for the sake of diversity. So, we’ve gotten better at it. But the racism is alive, I feel it every single time I’m in the Castro. People come from all over the world to San Francisco, and they bring their attitudes and beliefs with them. I think we also tend to just associate with people who are like us. Sometimes it’s not intentional, but it looks horrible.” Both men agree that Black lives are “in trouble now,” as Jones says. “One of the things I was hoping as a result of this series, and having people all over America look at this question of race, I was hoping that maybe for a month or so as families gather at the dinner table to say their grace over their meal, that they could say a grace for Black lives. I think Black lives are in trouble right now and I say that because I meet so many young people who are living their lives with the absence of hope. Can you imagine? Not having hope? That the shitty f ’d up life you have today is the one you’re going to have tomorrow? And the day after, and the day after? It does not make for great humanity.” Williams adds that “mental health in the Black community—in particular my community, the hood— is an issue that number one, we need to start talking about more. We need as a community to not make it a joke anymore you know, to not say, ‘Oh, that dude crazy.’ Mental health is real in our community, especially now in the time that we live in, where our kids, particularly are so stressed out and there’s so much trauma. So much post-traumatic stress that our kids in our community deal with now. Second thing, and I don’t know how to do this, but there needs to be… more facilities and not just in the emergency room for when we send our people in our communities in with these issues. You look at my good friend Earl Nash he just lost his life [because of his] 20-year bout with bipolar and schizophrenia. He’s the reason I started acting. He was not a thug, he was not a career criminal. This dude had a prominent career as an entertainer, as an athlete and an actor. Mental illness at 22 years old took him down the rabbit hole. He was never fully able to pull himself out and 20 years later, he’s dead now. He went from the hospital to the jail, the jail
their life’s work. I am just so fortunate that [creator Dustin] Lance Black and his team was very supportive and knew the importance of connecting us. I was so happy when she invited me … to a conference for transgender women and HIV. I got to actually watch her in action. To actually get to have that peek into her life as she’s doing her advocacy work, that really was very valuable not just for my work as an artist, but it really affected me as a person and as a member of the community. CHUNG: Meeting was not so much [about] telling her how to portray me in the TV series. It was more about getting to know her as a person. We bonded over dinner and we spent three days together when I was in New York [for Pride]. I think that because I made a friend with Ivory, I really want to see her succeed in the role. So, when she asked me about how I felt about certain things, I was able to give her input. I think that what really connected is that we talked about being Asian and Catholic. I feel that I can’t explain to somebody my inner thoughts and experiences, but because we have so many similarities … she understands … the struggle to survive. Ivory is the first Asian-American trans woman to play an Asian-American trans woman on American television. CHUNG: That really needs to be pointed out [as] kind of a big deal. I feel really excited and proud. I think that she’s actually really brilliant. She actually came here to New York to be a Shakespearean performer.
ROLES MODELED
Checking in with the HIV-positive leader and the trans actress who portrayed her on screen, making prime time history.
COURTESY IVORY AQUINO
She’s become one of the most visible transgender activists in the country, but Cecilia Chung was, at one point, just a girl trying to fit in a world that didn’t understand kids like her. In When We Rise, Ivory Aquino plays Chung first as a spunky street kid in San Francisco, helped out by poz activist and homeless youth advocate Ken Jones. By the third hour of the miniseries she’s an accomplished legal figure helping Jones get his life back together. Today, Chung is a senior strategist at the Transgender Law Center. She was the first transgender woman appointed as San Francisco Health Commissioner and, later, the first out HIV-positive person (and first trans woman) to serve as chair of the San Francisco Human Rights Commission. She also served on the U.S. Presidential Advisory Council on HIV/AIDS. Aquino, a first-generation immigrant and trans woman like Chung, is a rising stage actress. They tell Plus about meeting and moving the needle forward. What was your gut reaction when you first saw yourself portrayed on screen, Cecilia? CHUNG: It’s kind of surreal. But I think meeting Ivory in person and getting to know her helped really put me at ease with her playing me on the TV series. Ivory is a very likable young lady. So, it just makes it a lot easier. But TV series are different from real life. I had to learn to set my expectations aside. I have to remember this is just the essence of what happened in that period. It’s not necessarily an accurate recollection of events. Was meeting each other important to you? AQUINO: Oh, it was non-negotiable—I had to meet her. When someone is living and doing such amazing work, first of all you want to do justice to their life. You want to capture the core of
How much has San Francisco influenced your work? CHUNG: I moved to San Francisco in 1984 and I’ve been calling it home since then. I got to witness almost the entire HIV epidemic from the earlier gay period to now. And I think that it really shaped some of my activism and vision in social justice. Cecilia, you’ve had some tough, but common experiences. You lost your job, experienced homelessness, sex work, self medicating, and a violent sexual assault. How did you cope? CHUNG: I think that the most important part for me is finding hope towards the end of my 10-year-long history so to speak. I was estranged with my family but toward the end, even though I experienced a lot of trauma and violence, I was able to reconcile with my family—and that really made a big difference in my life. I felt hopeful again. My mom actually supported me on my gender reassignment surgery and gave me the funds I needed to fly to Bangkok to have my surgery. It was like my dream come true. It’s hard to describe the joy and gratitude I have. Now I really want to do whatever I can to support … others who may be experiencing similar challenges as I did, and to really help them find hope. What surprised you most about doing this series? AQUINO: I would say, rather than surprised, what reaffirmed my my belief in humanity is going on set and seeing that people weren’t concerned about sexual orientation or about gender.… [just] the desire to tell these stories about triumph and hope. So, it really was a group of people who didn’t care about differences. The creative team that I know, Gus [van Sant], Bruce [Cohen], and Lance Black, are part of the LGBT community. But once I got on the set and I met everyone on hair and makeup, camera people, everyone, it was people from all walks of life and it didn’t matter. Are you concerned about a roll back of rights under Trump? CHUNG: You know, that’s always the fear, and that’s the nature of bipartisan politics in the U.S. It seems that politics are getting more and more polarizing … it’s going to be very anti-abortion, anti-women, anti-LGBT, anti-immigrant. We’re expecting an onslaught of backlashes, and rolling back some of our wins we have experienced in the last eight years. But I think this TV series shows that we are very resilient. We have done this before and with a little organizing we can do this again. —DIANE ANDERSON-MINSHALL
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A CH O N E O F U S has the power to heal. Our bodies and spirits have a shared human language that can be accessed through the power of touch, movement, and joy. If done correctly, not only can we bring communities together, but we will also shift the trajectory of our culture. The Ballroom community, made famous in the early 1990s by Madonna’s music video “Vogue” and the documentary Paris Is Burning, has been uniting subcultures long before the Queen of Pop brought it to MTV. In the 1920s, Harlem balls were seen as a resistance to homophobia, transphobia, and the Black church. As it transitioned into what we call “house ballroom” in the 1960s with the Terrible Five—the founding mothers that bridged drag balls with ballroom: Crystal LaBeija, Avis Pendavis, Dorian Corey, Duchess LaWong, and Paris Dupress—it also became a resistance to racism and colorism. The ballroom scene as it exists today can be viewed as a resistance to patriarchy, white supremacy, toxic masculinity, and all the layers of oppressive structures that exist in the system. But this generation is different. Within the ballroom community itself rose an activist subculture called the “Kiki Scene,” which began over a decade ago by young
WE ARE FAMILY
The Kiki scene is not only a place for young LGBT people of color to dance and express themselves. For some youth, disproportionately impacted by HIV, homelessness, and anti-LGBT violence, it’s the only family they have. BY DAV I D A RTAV I A people accessing programs at GMHC (formerly the Gay Men’s Health Crisis), a New York City-based organization that provides resources to communities disproportionately affected by homelessness, HIV, and AIDS. Kiki is a youth-led component of the larger ballroom scene. Run by LGBTQ youth for LGBTQ youth, members range from young teens to 20s, and for many of them who’ve been thrown out of their families, house members are more than friends. They’re the only family they have. Ballroom performers belong to select houses, each founded by a different house “parent.” Not all houses are the same. In fact, each of them have their own uniqueness—some lean towards education, others lean towards relationships, family values, or community services. But all are motivated with a singular vision to shape each member into a person of character. TWIGGY PUCCI GARÇON is founder of the Kiki scene’s largest international house, the Opulent Haus of PUCCI, which promotes personal and professional development and targets community service initiatives within its communities. For Garçon, mentoring has become more than just a duty. It’s destiny. “I always say that there are three things I know I’m qualified to do,” he says. “I’m an empath, an intuit, and a healer. I’m able to feel what other people feel. I’m able 44
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to see things in a certain way. I’m able to help people realize and bring them into a place that they heal for themselves and improve themselves.” It was Garçon’s intuitiveness that inspired him and his best friend—renowned mentor, Founding Mother of the House of Unbothered-Cartier, and Empress of the Legendary House of Mizrahi—Chi Chi Mizrahi, to launch a project focusing on the Kiki scene. Destiny, as it were, appeared in the form of filmmaker Sara Jordenö, who happened to be at the offices of FACES NY (formerly Minority Task Force on AIDS), a Harlem-based organization where both Garçon and Mizrahi were working. After collaborating for many weeks, the trio decided to do a full-length documentary film, with Sara as director and Garçon as co-writer. The finished product is Kiki, one of the first movies to highlight the ballroom scene since Paris is Burning in 1990. “We wanted this to be a collaboration not just for Sara and me, but with the whole community,” Garçon says. What he wanted most from the film is for black and brown, queer and trans folks to see themselves and know that anything is possible—something he yearned for as a teenager growing up in Virginia. It’s been 13 years since Garçon’s first ballroom. After lying to his mom, telling her he was going to a “runway competition,” he traveled to nearby Richmond, Va.,
COURTESY KIKI/IFC FILMS
SCENES FROM THE DOCUMENTARY, KIKI (ABOVE)
with a high school friend who was openly gay and often vogued in their high school hallways between classes. “We went to the ball and I was taken aback by how many black people were there all in one space celebrating one another,” Garçon recalls. “It was quite overwhelming. I was nervous and didn’t want to compete; I still did. I didn’t know the difference between the runway and styles of runway and walks, so I went back to the drawing board. That same night was also the night I met the person who became my first gay “father” and mentor in the scene. From him and the members of my first house, which is the House of Chanel, teaching me runway, two months later I walked again and won runway.… And I never stopped.” The film Kiki follows seven figures from the Kiki community over the course of four years, spotlighting their performances—amidst their battles with homelessness and prejudice—and passion towards influencing culture through individual expression. “I was incredibly impressed with the individuals and the scene,” Jordenö says. “People share their struggles, but also their victories, in this beautiful way, as I interpreted it, to be able to lift each other up and to grow. People are saving each other’s lives in the scene.” The Swedish director is a longtime feminist, but was slowly loosing her faith in activism prior to shooting the film. After meeting people in the Kiki scene, Jordenö says her spirit was reignited. “There’s so much to learn,” she says. “I think the film should inspire a lot of communities, not just LGBT communities. I feel like we can look to the Kiki scene and ballroom community and be able to see the challenges we have today.” For those who are alone and feel compounded by institutions that fail us, finding a family and searching for community is almost a requirement to survive. The Kiki scene provides more than a place of solace. It’s a reminder that creative expression is a pathway to the soul, and ultimately, to inner freedom. “What brings us together are our issues, but what keeps us together is the joy,” adds Gia Marie Love, Queen Mother of the House of Juicy, and one of the stars of Kiki. “We center the Kiki scene around the HIV/STD narrative and people being vulnerable, but a lot of people come to the scene because of the joy. They [already] live the issues. They’re homeless. They’re being abused in many different ways. So when they come to the space, they can be. They can use it as an outlet to express in an artistic way what’s going on with them in their lives.” Using the human body as a canvas for expression requires introspection, something which is encouraged by everyone in the scene. Love shares an experience when she was in Norway teaching a few girls how to vogue. “Why can’t we vogue like you?” they asked. ( CO N T I N U E D O N PA G E 51 )
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YOU MATTER AND SO DOES YOUR HEALTH That’s why starting and staying on HIV-1 treatment is so important.
What is DESCOVY ?
What are the other possible side effects of DESCOVY?
DESCOVY is a prescription medicine that is used together with other HIV-1 medicines to treat HIV-1 in people 12 years and older. DESCOVY is not for use to help reduce the risk of getting HIV-1 infection. DESCOVY combines 2 medicines into 1 pill taken once a day. Because DESCOVY by itself is not a complete treatment for HIV-1, it must be used together with other HIV-1 medicines.
Serious side effects of DESCOVY may also include:
®
DESCOVY does not cure HIV-1 infection or AIDS. To control HIV-1 infection and decrease HIV-related illnesses, you must keep taking DESCOVY. 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 DESCOVY? DESCOVY may cause serious side effects: •
•
•
•
Buildup of an acid in your blood (lactic acidosis), which is a serious medical emergency. Symptoms of lactic acidosis include feeling very weak or tired, unusual muscle pain, trouble breathing, stomach pain with nausea or vomiting, feeling cold (especially in your arms and legs), feeling dizzy or lightheaded, and/or a fast or irregular heartbeat. Serious liver problems. The liver may become large and fatty. Symptoms of liver problems include your skin or the white part of your eyes turning yellow (jaundice); dark “tea-colored” urine; light-colored bowel movements (stools); loss of appetite; nausea; and/or pain, aching, or tenderness on the right side of your stomach area. You may be more likely to get lactic acidosis or serious liver problems if you are female, very overweight, or have been taking DESCOVY for a long time. In some cases, lactic acidosis and serious liver problems have led to death. Call your healthcare provider right away if you have any symptoms of these conditions. Worsening of hepatitis B (HBV) infection. DESCOVY is not approved to treat HBV. If you have both HIV-1 and HBV and stop taking DESCOVY, your HBV may suddenly get worse. Do not stop taking DESCOVY without first talking to your healthcare provider, as they will need to monitor your health.
•
Changes in body fat, which can happen in people taking HIV-1 medicines.
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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 DESCOVY.
•
Kidney problems, including kidney failure. Your healthcare provider should do blood and urine tests to check your kidneys. Your healthcare provider may tell you to stop taking DESCOVY if you develop new or worse kidney problems.
•
Bone problems, such as bone pain, softening, or thinning, which may lead to fractures. Your healthcare provider may do tests to check your bones.
The most common side effect of DESCOVY is nausea. Tell your healthcare provider if you have any side effects that bother you or don’t go away.
What should I tell my healthcare provider before taking DESCOVY? •
All your health problems. Be sure to tell your healthcare provider if you have or have had any kidney, bone, or liver problems, including hepatitis virus infection.
•
All the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. Other medicines may affect how DESCOVY works. Keep a list of all your medicines and show it to your healthcare provider and pharmacist. Ask your healthcare provider if it is safe to take DESCOVY with all of your other medicines.
•
If you are pregnant or plan to become pregnant. It is not known if DESCOVY can harm your unborn baby. Tell your healthcare provider if you become pregnant while taking DESCOVY.
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If you are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed. HIV-1 can be passed to the baby in breast milk.
You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/ medwatch, or call 1-800-FDA-1088. Please see Important Facts about DESCOVY, including important warnings, on the following page.
Ask your healthcare provider if an HIV-1 treatment that contains DESCOVY® is right for you.
IMPORTANT FACTS (des-KOH-vee)
This is only a brief summary of important information about DESCOVY and does not replace talking to your healthcare provider about your condition and your treatment. ®
MOST IMPORTANT INFORMATION ABOUT DESCOVY
POSSIBLE SIDE EFFECTS OF DESCOVY
DESCOVY may cause serious side effects, including:
DESCOVY can cause serious side effects, including:
• Buildup of lactic acid in your blood (lactic acidosis), which is a serious medical emergency that can lead to death. Call your healthcare provider right away if you have any of these symptoms: feeling very weak or tired, unusual muscle pain, trouble breathing, stomach pain with nausea or vomiting, feeling cold (especially in your arms and legs), feeling dizzy or lightheaded, and/or a fast or irregular heartbeat.
• Those in the “Most Important Information About DESCOVY” section. • Changes in body fat. • Changes in your immune system. • New or worse kidney problems, including kidney failure. • Bone problems.
• Severe liver problems, which in some cases can lead to death. Call your healthcare provider right away if you have any of these symptoms: your skin or the white part of your eyes turns yellow (jaundice); dark “tea-colored” urine; loss of appetite; light-colored bowel movements (stools); nausea; and/or pain, aching, or tenderness on the right side of your stomach area. • Worsening of hepatitis B (HBV) infection. DESCOVY is not approved to treat HBV. If you have both HIV-1 and HBV, your HBV may suddenly get worse if you stop taking DESCOVY. Do not stop taking DESCOVY without first talking to your healthcare provider, as they will need to check your health regularly for several months. You may be more likely to get lactic acidosis or severe liver problems if you are female, very overweight, or have been taking DESCOVY or a similar medicine for a long time.
ABOUT DESCOVY • DESCOVY is a prescription medicine that is used together with other HIV-1 medicines to treat HIV-1 in people 12 years of age and older. DESCOVY is not for use to help reduce the risk of getting HIV-1 infection. • DESCOVY does not cure HIV-1 or AIDS. Ask your healthcare provider about how to prevent passing HIV-1 to others.
The most common side effect of DESCOVY is nausea. These are not all the possible side effects of DESCOVY. Tell your healthcare provider right away if you have any new symptoms while taking DESCOVY. Your healthcare provider will need to do tests to monitor your health before and during treatment with DESCOVY.
BEFORE TAKING DESCOVY Tell your healthcare provider if you: • Have or had any kidney, bone, or liver problems, including hepatitis infection. • Have any other medical condition. • Are pregnant or plan to become pregnant. • Are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed if you have HIV-1 because of the risk of passing HIV-1 to your baby. Tell your healthcare provider about all the medicines you take: • Keep a list that includes all prescription and over-thecounter medicines, vitamins, and herbal supplements, and show it to your healthcare provider and pharmacist. • Ask your healthcare provider or pharmacist about medicines that should not be taken with DESCOVY.
GET MORE INFORMATION HOW TO TAKE DESCOVY • DESCOVY is a one pill, once a day HIV-1 medicine that is taken with other HIV-1 medicines. • Take DESCOVY with or without food.
• This is only a brief summary of important information about DESCOVY. Talk to your healthcare provider or pharmacist to learn more. • Go to DESCOVY.com or call 1-800-GILEAD-5 • If you need help paying for your medicine, visit DESCOVY.com for program information.
DESCOVY, the DESCOVY Logo, GILEAD, the GILEAD Logo, and LOVE WHAT’S INSIDE are trademarks of Gilead Sciences, Inc., or its related companies. All other marks referenced herein are the property of their respective owners. © 2016 Gilead Sciences, Inc. All rights reserved. GILC0265 10/16
D A I LY D O S E BY KAMIA SCIPIO
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LOVE IN THE TIME OF HIV
HOW SHE KEPT LOVE GOING, EVEN AFTER LEARNING THE HARD WAY (WHILE SHE WAS PREGNANT) THAT HER BOYFRIEND WAS HIV-POSITIVE.
I WAS 2 3 Y E A R S O L D when I found out. We met when I was 22 and he was 29. He didn’t look his age so I didn’t mind the seven-year age difference. We fell in love quickly, and he fell in love with my son, who was 3 at the time. That was huge. Our motivations, aspirations, and dreams bounced off of each other like a racquetball. I was in love. I was already four months along when I found out I was pregnant. Ironically, that gave us more goals and aspirations: to get married and buy a home so the kids could have their own backyard and rooms to themselves—something I didn’t always have growing up. We shared so many secrets during late night conversations; deep dark secrets from the past that let us laugh and cry and hold each other even tighter. Our living was meager: we often went from one cheap motel room to another. Just days after my son’s 4th birthday, I started to feel very anxious and scared because I couldn’t feel my baby moving. We rushed down to the doctor, but everything was fine. One night I had a dream (it felt more like a premonition) where I got to meet my partner’s mother. She was a beautiful Black angel with wings so wide. She smiled and placed her hands on my stomach. It was like a healing touch, but I didn’t really get the significance of the dream yet. I understood that my baby was a loving gift from God, since my partner was once told he couldn’t have kids. By the time I had my follow-up a week later, everything was falling into place. I have a rare blood disorder—Thrombotic Thrombocytopenic Purpura or TTP—that doctors discovered when I was 16. I still freak out HIVPLUSMAG.COM
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if I bump into something because it takes longer to show, and it can turn into a blood clot. So I worried about that while waiting for test results, but it didn’t stop us from getting caught up in the excitement of both a new apartment and new baby on the way. And then it happened. My doctor called to say something was wrong, but she said she couldn’t tell me over the phone. As I was freaking out thinking I needed more blood or plasma, my partner grabbed my hand with tears rolling down his face. “Babe you’re going to hate me for this and I won’t blame you if you leave me, but I know what’s wrong with your results,” he said. “I gave you HIV. I was born with it and now you have it and now our baby might have it. I’m so sorry I just didn’t know how to tell you.” I sat there with tears rolling down my face and I couldn’t breathe. I was numb. I felt so hurt and betrayed. He got up to leave until I grabbed his hand and reminded him of the dream I had of his mom blessing our child. “I am pissed off at you, but I’m not going to leave you,” I told him. Things would be a lot different now, but there had been so many medical breakthroughs around HIV, and it wasn’t like the 1980s when he was born, both in terms of treatment and stigma. We would be resilient and get help. We hugged that day, but we did not kiss. The celebration was over. With that bad news I just felt like everything was crashing down and I couldn’t catch a break. My mind was like a roller coaster, but I had to get myself back together for my appointment. I kept telling myself everything would be OK. The next day my doctor put me on Stribild and Bactrim DS while I was pregnant. I had to take two pills a day, and then when my princess arrived she’d have to take medicine too just to be safe. It felt like this was all just too much and I was overwhelmed. We planned to set a date for a C-section birth on New Year’s day, but it wouldn’t be. On December 17th, I spotted blood and it was go time. I rushed down to the hospital as soon as possible and I was a mess. I was freaking out. I was nervous and scared. That night I was cut open and her cry touched my heart. My baby. I held her and cried. I hadn’t even been on 50
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my meds for two weeks when Arianna decided it was show time. With only two weeks of meds in my system, the likelihood of my daughter being born HIV-negative was low. As a mother, I felt both excited and terrible that day and in the weeks ahead.
my doctor’s facial expressions and body language and I just couldn’t tell with her. She had such a poker face. She looked up at me and just sounded shocked. “You’re undetectable!” she told me. Undetectable means I’m healthy and
“YOU’RE UNDETECTABLE!” SHE TOLD ME. UNDETECTABLE MEANS I’M HEALTHY AND UNABLE TO TRANSMIT HIV TO ANYONE ELSE. The rollercoaster ride continued after we got home. I had more meds to take (this time, Genvoya) and my daughter had to have Zidovudine every 4 to 6 hours, every single day. It was killing me. We cried over her every time it was time to give her the medicine. As a new mom and newly diagnosed as HIV-positive, I was consumed with postpartum depression. I didn’t want to take any more medications myself. And I didn’t want to give my daughter anymore medicine either. I was so tired of it all. When she got her vaccines at 6 months old, they drew blood too. At the follow up, our pediatrician came in all smiles and said those magic words: “Your daughter is negative for HIV.” I exhaled as though I had been holding my breath for six months. My own follow-up was two days later, but I was nervous. With my HIV medicine, you’ve got to take it the same time every day and I had missed a few days due to my depression. So the day of my appointment arrived and I watched
unable to transmit HIV to anyone else. I felt ecstatic like I could fly if I wanted to. That word “undetectable,” I’ll admit, did make me feel “normal” again. But who defines what’s normal, anyway? I tell other young women, my best advice to anyone really, is to know your partner’s HIV status. It could’ve been worse for me, but my my health is better. Now I’m 25 and still undetectable. Both of my kids are nice and healthy, growing into strong, amazing, and incredibly smart little people. My partner and I celebrated our third anniversary earlier this year. There are no more secrets between us. I’m happy. He’s happy. Our kids are happy. In just a few years, I’ve grown so much and learned a great deal about life and being aware of your own needs and those around you. This journey through love, parenthood, partnership, and HIV, helped me realize that sometimes what seems like the worst thing in the world to happen to you can turn out to be a blessing in disguise.
KAMIA SCIPIO lives in Atlanta, where she devotes
most of her time to raising her two children. She plans to return to college and pursue a degree in creative writing.
COURTESY SUNDANCE SELECTS (2), FACEBOOK (MAKEUP)
( CO N T I N U E D F R O M PA G E 4 5 )
“I said, ‘It’s not that you can’t,’” Love explains. “When I learned how to vogue they said I can’t teach it. You have to learn it, because your vogue is from your own experience. We learn from our pain and suffering. Vogue from your core.” When the Kiki scene started, one of its main missions was to spread HIV awareness to LGBT youth of color. A majority of people in the scene are impacted by the virus, and use their shared knowledge to start important discussions. “I’ve lost over 25 personal friends and family from complications due to AIDS,” Garçon, says. “It’s affected me very emotionally, very deeply. I’m not a very pessimistic person so moments of loss drive me to continue doing the work I’m doing.” Another important aspect of the scene is for poz youth to interact with HIV-negative youth, to show that unity is the best form of therapy. But educating people on sex health, treatment, and prevention is easily stunted by stigma. “I think that the social stigma around PrEP and related things is detrimental to the progression of us and to all communities impacted and infected with and by HIV,” Garçon, points out. “And also homelessness. There’s social stigmas for that. I feel that if people cannot talk openly about what they’re going through, then how do we heal through the experience? How do we transform the experience to be one of healing and progression? The tide is turning because more people are aware of the importance of PrEP, and of housing. There’s treatment, there’s prevention. PrEP specifically has a lot to do with people being more sex positive and not slut-shaming. People have sex, that’s a real thing. And if people want to have sex with no condoms then they should be able to do that. And do it in a way that’s preventative of other things.” Love, a trans HIV and LGBT advocate, has worked to provide data for the Centers for Disease Control and Prevention so it can better understand diagnoses rates among men who have sex with men and among those in the trans community. “The CDC groups trans women with MSM,” she says, explaining the agency’s practice of counting trans women as though they were gay or bi men. As a result, Love says, “our numbers are conflated. The funding that [CDC] is giving is for men who have sex with men and that’s a barrier to accessing care for trans women.“ That’s why HIV outreach to the ballroom scene is so important. “Anyone’s involvement in the Kiki scene—they’re getting educated about HIV and STDs incorporated in the ballroom performance. There’ll be a category that says, ‘Create a HIV STD campaign in a creative way.’ For example, you’ll have people using social media, media graphics to create these campaigns to help educate each other about HIV and STDs. That’s the type of advocacy I’ve done.” The motto “Not About Us Without Us” is often used in the Kiki scene to describe the need for policy makers and government leaders to include members of the LGBT community in the conversation before assessing their needs. It’s a sentiment adopted by HIV activists early in the AIDS epidemic. “It’s a statement that, quite simply, means there shouldn’t any conversation happening about any of us without those folks being at the table in a meaningful
and engaging way,” Garçon says. “There shouldn’t be a project created for and about [any group of] people without them being at the table. And not just at the table but having power.” If there’s one project showing the power of involvement, it’s Kiki. “I want people to feel enraged. I want them to feel hopeful. I want them to feel pride. I want them to feel intellectually stimulated,” Jordenö says the film’s desired reaction. “I want to change their perspective. It’s self-empowerment. I want people to feel that.” “I wish people would see themselves [in Kiki] and see a world that doesn’t have to exist in this very oppressive way,” Garçon adds. “And that we can heal from our troubles, and we can dream of things, and think of things, and say a thing, and do it. Really manifest our own realities.”
it’s one kiki world (from top): director sara jordenö; garcon gets made up behind the scenes; and garcon on stage with best friend, chi chi mizrahi
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UNDETECTABLE BY MARK S. KING
yeah, this guy gets it!
CELEBRATE!
UNDETECTABLE SEX IS SAFER SEX! WHY WE MUST EMBRACE UNDETECTABLE MEANS UNTRANSMITTABLE.
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And yet there’s strong resistance to the message equating undetectable to untransmittable, and it’s not coming from where you might think. So, let’s break down the arguments for and against embracing the message: 1. IS ANYTHING EVER ZERO RISK?
The PARTNER Study has recorded 58,000 acts of penetrative sex without condoms between 1,000 serodiscordant partners (where one is HIV-positive and one HIV-negative), in which the HIV-positive partner had an undetectable viral load. There was not a single case of transmission between the couples. Zero. The same results were reported in the HPTN 052 study in which 1,763 serodiscordant couples relied only on the one partner’s antiretroviral medication as their HIV-prevention method. Absolutely no documented cases of HIV being transmitted between partners have happened when one is undetectable. As Dr. Wolitiski said in his USCA address, “this is a game-changing moment in the history of the HIV epidemic.” Detractors argue that nothing, really, is without risk, statistically speaking. Even if the risk is miniscule—say equivalent to being struck by lightning twice—it still carries risk. Weird things happen. People who drink alcohol sometimes spontaneously combust. It allegedly
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“ W E A R E N OT dirty, we are not a threat, and we are not disease vectors!” Dr. Richard Wolitski, director of the Office for HIV/AIDS and Infectious Disease Policy at the U.S. Department of Health and Human Services told the crowd at the 2016 U.S. Conference on AIDS. “People living with HIV who achieve viral suppression, who become undetectable, are the solution to the end of new HIV infections in the United States. When we look back 20 years from now we’re going to judge ourselves in terms of how well we responded to this opportunity.” Wolitski’s closing remarks drew a standing ovation. This is indeed a remarkable moment, and one we must embrace. Several on-going studies (HPTN 052 and the PARTNER study), have demonstrated that people living with HIV who are on medication and have reduced their viral loads to undetectable levels are not transmitting the virus to their HIVnegative partners. How wonderful that something many of us have believed for years has been proven to be true! What great news and a terrific reason to seek treatment and stick with it. There’s nothing like a little intercourse au naturel with your partner to reward yourself for being undetectable, am I right?
happens a couple times a year around the world. But you don’t see warning labels about it slapped on every bottle of Wild Turkey by overzealous worrywarts. And yes, there is the possibility that someone might think they were still undetectable and yet develop a viral load if they aren’t adherent to treatment (or if they become resistant to one of their meds), and then they could transmit the virus. But that doesn’t detract from the message that people who are undetectable cannot transmit HIV. If you stay on treatment and remain undetectable you will not transmit HIV. Can we please just celebrate this simple fact for a moment without qualifying it with all the remote possibilities? 2. NOT ALL MAJOR HIV ORGANIZATIONS ARE ON BOARD.
Community advocates and organizations have been reluctant to get on board, citing a theoretical risk of infection. A review of the websites and statements from major HIV organizations shows that there’s no consensus about whether to proclaim undetectable people cannot transmit HIV. Worse, some organizations still seem to be exaggerating the risks of transmission from those who are undetectable. While I will defer from shaming anyone by name, with the hope that they are just taking their time updating their official language, I do wonder how such an amazing breakthrough can be met with ignorance or apathy by our own leaders. The skepticism suggests that those of us who have achieved undetectability don’t have the judgment to keep taking our medications—or to see our physician regularly—to ensure our treatment plan is still effective. It keeps us in the role of untrustworthy victimizers unable to make decisions that will keep the rest of you safe. What infuriating, stigmatizing nonsense. Meanwhile, public health leaders, from the New York Department of Health to the National Institutes of Health, have embraced these findings and their meaning to people with HIV. The Prevention Action Campaign and their seminal message “U=U” (undetectable equals untransmittable) was founded on the energetic efforts of a man named Bruce Richman. He entered the HIV advocacy scene just a few years ago, seemingly out of nowhere, carrying aloft the banner of undetectability. Richman gathered signatures of health experts the world over for a consensus statement about the research, while cajoling U.S. HIV organizations to adopt language that removes the stigma of infectiousness from people who are undetectable. 3. WILL EMBRACING U=U LEAD TO MORE STIS?
Auxiliary issues often creep into debates around preventing HIV, such as the fear that promoting the message that undectable equals untransmittable will lead to more sexually transmitted infections. (Similar arguments have come from critics of PrEP, the birth control pill, and any other vehicle that might lead to unbridled sexual pleasure). Rates of STIs—which had already been rising before the advent of PrEP or news from the PARTNER Study—are deeply concerning. We are in desperate need of comprehensive sexual health programs, to be sure. But, ultimately, this is about being HIV untransmittable, not syphilis impermeable. Being undetectable will not prevent other infections, or address promiscuity, or remove stubborn stains. Other advocates are concerned about the continued compartmentalization of our community, between those who are positive or not, who is on PrEP or not, and now, between those with HIV who are able to achieve viral suppression and those who cannot—which include those who are unable to do so despite their best efforts. I sympathize with those not wanting a new divide among HIV-positive people. But I also believe the greater good—eliminating shame and stigma from those who are no longer capable of transmitting HIV—shouldn’t be downplayed. Rather than discount this development, we should celebrate it; and continue our efforts to help all people living with HIV suppress their viral loads to undetectable levels.
4. PROCLAIMING U=U COULD FORWARD HIV CRIMINALIZATION REFORM.
Terribly important work is being done to repeal and reform HIV criminalization laws that prosecute people with HIV for not disclosing their status to a sexual partner. Our lead defense is often that the defendant never posed a risk to their partner in the first place, due to their use of protection or the fact that the defendant was undetectable at the time and therefore rendered harmless. Of course, we still have the point that HIV isn’t the kind of death-sentence zealous legislators once imagined it to be. But imagine the glee with which prosecutors might punch holes in an undetectable defense, if HIV organizations themselves are still insisting that “zero risk” is statistically impossible. The prosecutor could use that to explain to a jury that Joe Positive did, in fact, pose a risk to his sexual partner and should thus be jailed for doing so. Put that doubt into the heads of a jury, and another person with HIV may get a 30-year sentence for daring to have sex at all. 5. THIS COULD PROFOUNDLY CHANGE HOW PEOPLE WITH HIV VIEW THEMSELVES.
Internalizing the information that I cannot transmit HIV has had an effect on me that is difficult to describe. I can only liken it to the day the Supreme Court voted for marriage equality. Intellectually, I knew I was, as a gay man, a human being worthy of equal rights. But on the day of the court’s decision I walked through the streets of my neighborhood with my head held higher. Something had changed. I felt whole. Recognized. Vindicated. In my thirty-five years living with this virus, I have never felt that way about being HIV-positive. I deserve to. So do millions of other people living with HIV. We’ve been told we’re diseased, dirty, infectious, and hazardous to those we love. Proclaiming U=U can start to undo all of those stigmatizing messages. We can hold our heads high, knowing we cannot transmit the virus to our partners. Of all the arguments, that enhanced feeling of self-worth may be the most important of them all.
Plus magazine contributing editor, MARK S. KING, is the GLAAD award-winning blogger behind My Fabulous Disease, where this piece was originally published. HIVPLUSMAG.COM
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THE JACKSON (HIGH) FIVE How young HIV activists in one Mississippi town are finding family in an organization. BY DAV I D A RTAV I A
T TA K E S A V I L L A G E to raise a child. But to turn a child into a leader requires a little more. It requires wisdom—and a mentor who’s willing to pass on the torch of their knowledge and eager to share their experiences in hopes of turning pain into purpose. That’s exactly what one Mississippi organization offers. A study released by Atlanta’s Emory University shows that 40 percent of gay and bisexual men who have sex with men in Jackson, Miss., are HIV-positive. The community of Jackson has one of the highest diagnosis rates in the Unites States. Fortunately, it is also home to one of the most progressive organizations striving to educate communities about the virus, as well as provide access to care, and mentor LGBT youth, turning them into community leaders. Dr. Mark Anthony Colomb established the Jackson-based organization My Brother’s Keeper in 1999 to deliver a range of prevention, care, and treatment programs for people living with or at risk of HIV. Although Colomb passed away in 2011, his organization has gone on to become a lighthouse for LGBT youth hoping to find their way home, especially for those without a role model to look up to. My Brother’s Keeper president and CEO, Dr. June Gipson, and other community leaders—Dr. DeMarc Hickson, Cedric Sturdevant (who many refer to as “Dad”), Dr. Mark Henderson, Gerald Gibson, and Temica Morton—have inspired the community’s young people to pass their own torches of knowledge. As it turns out, they have ignited a new age of activism in the process. “Early in life, I always felt like I was an outcast, and often misunderstood,” says 27-year-old Reginald “Regi” Stevenson. After watching his uncle succumb to AIDS complications in the mid-1990s, a family member said, “This is what happens to people who are gay.” Those words stuck with him as he continued to 54
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new leaders (from top): tommy brown, regi stevenson, and james watson
brother’s keepers (from left): isaiah hicks, dominique morton, james watson, teayaka jones, cordaro ware, regi stevenson, and cordarian draper
watch peers die of the same complications—until one day he decided to get involved in the fight. Stevenson found My Brother’s Keeper and met Cedric Sturdevant, who is now the project manager for Safe Place Over Time. “[Cedric’s] humbling spirit and encouraging words saved my life. I never knew what it was like to have a dad, but then God introduced us.” Now a patient navigator coordinator for My Brother’s Keeper, Stevenson says that mentorship is crucial in his world. “Life is a cycle and we all experience the same things but in different times. There is nothing more beautiful than sharing common experiences, and hashing out the outcomes or solutions with a collective tone,” he says. “I learn valuable things by them being who they are, and seeing them want better. It’s a new day, and new leaders are forming. We all have stories, and we need a friend to share it with.” Tommy Brown, 29, is the project coordinator for the healthy relationship program at the organization. In 2009, he was so inspired by those working in the HIV community that he took it upon himself to learn more, which led him to meeting Sturdevant. The leader became his role model. And when he was diagnosed with HIV a year later, his urge to fight for the cause grew stronger.
“I take honor and pride in my job knowing that I have the power to change so many lives,” Brown says. “For me, being that mentor to a young Black or White LGBTQ person and helping them navigate through this journey we call life is extremely important. If it wasn’t for the great men that mentored me and taught me everything I know, I honestly can’t fathom where I would be now.” It’s easy to lose sight of your destiny without proper guidance. Because many of the young workers at My Brother’s Keeper were once clients themselves, they present themselves not as corporate clinical workers, but as members of the community. That little switch helps diminish the anxieties other men face when it comes to testing. “Building a ministry of my own had always been a dream of mine growing up, as I’ve ministered through dance at my hometown church and feeling like that’s the type of work I know I’ve been called to do,” says James Watson, now 25. His role in the organization necessitates community involvement, which allows him to reach people in all branches of the community as an HIV-negative ally. “Once I noticed how much of an impact I could make, I began looking for ways to continue this journey of healing,” Watson continues. “I can say I have been led to My Brother’s Keeper for that reason: to save lives. The role models I have in the LGBT community have made such a tremendous contribution. They’ve changed my life forever. I’ve been told that in order to succeed you must fail, so that you can know what to work on for the next attempt to succeed. The lessons given allowed me to think more and to advance my skills and desire to become a beacon of light for our community, allowing more to be accomplished.” A revolution always begins with young people, but without the mentorship of elders it’s almost impossible to bring wisdom and insight into present knowledge. As Watson puts it, “Those who have come before us and have experienced what we may be currently going though can guide us in the right direction, basically saving our lives and helping us make the right decisions, to not becoming what society sees us as.” Not many in our community can say they have mentors, but in actuality, we are those mentors that we want our community to have,” Watson says. “We are the change that we want to see and with every piece of knowledge and inspiration I’ve been given over time, I plan to be that mentor for someone who needs my help.” HIVPLUSMAG.COM
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How does HIV affect my future? It doesn’t. Let’s Grow Old Together See what life with HIV looks like from diagnosis through grandkids with a little help from Walgreens. Explore Calvin’s HIV journey at Walgreens.com/LetsGrowOldTogether. ©2017 Walgreen Co. All rights reserved.
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Your pharmacist can make a
real difference People may know their neighborhood pharmacist as someone in a white coat who fills pill bottles. In reality, pharmacists can also be great sources of personal support and medication guidance. They are close by and able to answer questions without an appointment. Whether you are newly diagnosed or have been living with HIV for years, he or she can help you manage, afford and get the most from your medications.
Helping you stay on track Taking your medications on time, in the correct dose and in the right way can be big factors in making sure they stay effective. Your pharmacist can help you identify any barriers that may keep you from staying on track. Walgreens has convenient digital tools that can help, such as pill reminders and the ability to set up refills by email or text.*
A big part of my role now is getting patients through things like heart or cancer issues down the road more so than someone dying potentially from their HIV. Andrew MacDonald, HIV-specialized Walgreens pharmacist
Helping you afford your medications Many medications, including those for HIV, can be costly with high copays, which can make it hard to stay on your treatment plan. The good news is that there are copay assistance
sources and even manufacturer programs that can help bring costs down. Ask your Walgreens pharmacist about these programs. He or she can help you find them and even help you apply.
Helping you manage multiple medications Because most people with HIV now live long lives, some may develop other health conditions such as diabetes or heart disease along the way. Pharmacists like Andrew can help you manage medications for all health conditions, and can even work with you to arrange a same-day refill so you can pick up all your medications at the same time. To learn more about Walgreens HIV services, visit HIV.Walgreens.com.
*Message and data rates may apply. Ongoing texts may be sent using an automatic telephone dialing system when prescriptions are ready for pickup and refill. Consent not required for purchase. Reply STOP to cancel or HELP for help. ©2017 Walgreen Co. All rights reserved.
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