HIV Plus Issue 117 March/April 2017 by Pride Media

BECAUSE YOU’RE MORE THAN YOUR STATUS

LONG -TE RM TH RIVE RS TE LL IT LIKE IT IS WHY WE LOVE SIA’ S HIV+ MANAG E R

B E ATING R ESISTANCE YOU R B L ACK LIFE MAT TE RS G ET TING TO U N DETEC TAB LE

G R EG LOUGAN I S IS STILL SEX Y AF AT 56

MARCH/APRIL 2017 www.hivplusmag.com

WHAT IS ODEFSEY®?

What are the other possible side effects of ODEFSEY?

ODEFSEY is a 1-pill, once-a-day prescription medicine used to treat HIV-1 in people 12 years and older. It can either be used in people who are starting HIV-1 treatment, have never taken HIV-1 medicines before, and have an amount of HIV-1 in their blood (“viral load”) that is no more than 100,000 copies/mL; or in 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. ODEFSEY combines 3 medicines into 1 pill taken once a day with a meal. ODEFSEY is a complete HIV-1 treatment and should not be used with other HIV-1 medicines.

Serious side effects of ODEFSEY may also include: • Severe skin rash and allergic reactions. Skin rash is a common side effect of ODEFSEY. Call your healthcare provider right away if you get a rash, as some rashes and allergic reactions may need to be treated in a hospital. Stop taking ODEFSEY and get medical help right away if you get a rash with any of the following symptoms: fever, skin blisters, mouth sores, redness or swelling of the eyes (conjunctivitis), swelling of the face, lips, mouth, or throat, trouble breathing or swallowing, pain on the right side of the stomach (abdominal) area, and/or dark “tea-colored” urine. • Depression or mood changes. Tell your healthcare provider right away if you: feel sad or hopeless, feel anxious or restless, have thoughts of hurting yourself (suicide) or have tried to hurt yourself. • Changes in liver enzymes. People who have had hepatitis B or C or who have certain liver enzyme changes may have a higher risk for new or worse liver problems while taking ODEFSEY. Liver problems can also happen in people who have not had liver disease. Your healthcare provider may do tests to check your liver enzymes before and during treatment with ODEFSEY. • 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 ODEFSEY. • 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 ODEFSEY 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.

ODEFSEY does not cure HIV-1 infection or AIDS. To control HIV-1 infection and decrease HIV-related illnesses, you must keep taking ODEFSEY. 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 ODEFSEY? ODEFSEY 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; loss of appetite; light-colored bowel movements (stools); 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 ODEFSEY or a similar medicine 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 virus (HBV) infection. ODEFSEY

is not approved to treat HBV. If you have both HIV-1 and HBV and stop taking ODEFSEY, your HBV may suddenly get worse. Do not stop taking ODEFSEY without ﬁrst talking to your healthcare provider, as they will need to monitor your health.

Who should not take ODEFSEY? Do not take ODEFSEY if you take: • Certain prescription medicines for other conditions. It is important to ask your healthcare provider or pharmacist about medicines that should not be taken with ODEFSEY. 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 should I tell my healthcare provider before taking ODEFSEY? • All your health problems. Be sure to tell your healthcare

provider if you have or have had any kidney, bone, mental health (depression or suicidal thoughts), or liver problems, including hepatitis virus infection. • All the medicines you take, including prescription and overthe-counter medicines, vitamins, and herbal supplements. Other medicines may affect how ODEFSEY 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 ODEFSEY with all of your other medicines. • If you are pregnant or plan to become pregnant. It is not known if ODEFSEY can harm your unborn baby. Tell your healthcare provider if you become pregnant while taking ODEFSEY. • If you are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed. HIV-1 can be passed to the baby in breast milk.

Ask your healthcare provider if ODEFSEY is right for you, and visit ODEFSEY.com to learn more. 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 ODEFSEY including important warnings on the following page.

ODEFSEY does not cure HIV-1 or AIDS.

SHOW YOUR

RADIANCE ODEFSEY is a complete, 1-pill, once-a-day HIV-1 treatment for people 12 years and older who are either new to treatment and have less than 100,000 copies/mL of virus in their blood or people whose healthcare provider determines they can replace their current HIV-1 medicines with ODEFSEY.

IMPORTANT FACTS This is only a brief summary of important information about ODEFSEY® and does not replace talking to your healthcare provider about your condition and your treatment.

(oh-DEF-see) MOST IMPORTANT INFORMATION ABOUT ODEFSEY

POSSIBLE SIDE EFFECTS OF ODEFSEY

ODEFSEY may cause serious side effects, including:

ODEFSEY 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.

•

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. ODEFSEY is not approved to treat HBV. If you have both HIV-1 and HBV, your HBV may suddenly get worse if you stop taking ODEFSEY. Do not stop taking ODEFSEY 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 ODEFSEY or a similar medicine for a long time.

• • • •

• •

Those in the “Most Important Information About ODEFSEY” section. Severe skin rash and allergic reactions. Depression or mood changes. Changes in liver enzymes. Changes in body fat. Changes in your immune system. New or worse kidney problems, including kidney failure. Bone problems.

The most common side effects of rilpivirine, one of the medicines in ODEFSEY, are depression, trouble sleeping (insomnia), and headache. The most common side effect of emtricitabine and tenofovir alafenamide, two of the medicines in ODEFSEY, is nausea. These are not all the possible side effects of ODEFSEY. Tell your healthcare provider right away if you have any new symptoms while taking ODEFSEY. Your healthcare provider will need to do tests to monitor your health before and during treatment with ODEFSEY.

BEFORE TAKING ODEFSEY ABOUT ODEFSEY •

ODEFSEY is a prescription medicine used to treat HIV-1 in people 12 years of age and older who have never taken HIV-1 medicines before and who have an amount of HIV-1 in their blood (“viral load”) that is no more than 100,000 copies/mL. ODEFSEY can also be used to replace current HIV-1 medicines for some people who have an undetectable viral load (less than 50 copies/ mL), have been on the same HIV-1 medicines for at least 6 months, have never failed HIV-1 treatment, and whose healthcare provider determines that they meet certain other requirements.

•

ODEFSEY does not cure HIV-1 or AIDS. Ask your healthcare provider about how to prevent passing HIV-1 to others.

Do NOT take ODEFSEY if you: • Take a medicine that contains: carbamazepine (Carbatrol®, Epitol®, Equetro®, Tegretol®, Tegretol-XR®, Teril®), dexamethasone (Ozurdex®, Maxidex®, Decadron®, Baycadron™), dexlansoprazole (Dexilant®), esomeprazole (Nexium®, Vimovo®), lansoprazole (Prevacid®), omeprazole (Prilosec®, Zegerid®), oxcarbazepine (Trileptal®), pantoprazole sodium (Protonix®), phenobarbital (Luminal®), phenytoin (Dilantin®, Dilantin-125®, Phenytek®), rabeprazole (Aciphex®), rifampin (Rifadin®, Rifamate®, Rifater®, Rimactane®), or rifapentine (Priftin®). •

Take the herbal supplement St. John’s wort.

•

Take any other HIV-1 medicines at the same time.

Tell your healthcare provider if you: • Have or have had any kidney, bone, mental health (depression or suicidal thoughts), 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 ODEFSEY.

HOW TO TAKE ODEFSEY • •

ODEFSEY is a complete 1-pill, once-a-day HIV-1 medicine. Take ODEFSEY with a meal.

GET MORE INFORMATION •

• •

This is only a brief summary of important information about ODEFSEY. Talk to your healthcare provider or pharmacist to learn more. Go to ODEFSEY.com or call 1-800-GILEAD-5 If you need help paying for your medicine, visit ODEFSEY.com for program information.

ODEFSEY, the ODEFSEY Logo, GILEAD, and the GILEAD Logo are trademarks of Gilead Sciences, Inc., or its related companies. All other marks referenced herein are the property of their respective owners. Version date: March 2016 © 2016 Gilead Sciences, Inc. All rights reserved. ODEC0026 06/16

APP

Out Magazine

EDITOR’S LETTER I ’ M A L L A B O U T Greg Louganis’s body this year. Seriously. That may sound perverse or shallow. After all, he’s a smart, generous, compassionate gay man so reducing him to his body would usually be the kind of objectification I’d find highly offensive. But here’s the thing. Greg, like a lot of the long-term thrivers in this issue, acquired HIV at a time when the images of people with the virus were generally guys weakened, wasted, covered with Kaposi’s sarcoma spots, or dying of AIDS complications in a Benetton ad. (For the record, Therese Frare’s photo of David Kirby on his death bed surrounded by family at the Pater Noster House, an AIDS hospice in Columbus, Ohio, is still a powerful reminder of the early AIDS epidemic and I’m glad that Life magazine and Benetton used it to raise awareness.) Greg is a reminder of where we are now: Thriving in a time when you can be healthy, whole, and happy while living with HIV. Yes, it requires you to carefully manage your treatment,

nutrition, and fitness regimes, but it’s worth it. This year Greg got naked for an ESPN magazine photoshoot. (Not an easy feat for any 50-something!) He dove side-by-side with guys in their 20s wearing nothing but a tiny Speedo. He supported LGBT rights, often hand-in-hand with his husband, Johnny, including going into increasingly hostile Russia to encourage queer and trans kids to hang on and have hope. Still, I come back to his body, because there’s something really amazing in knowing that one of America’s contemporary sex symbols is a middle-aged, half-Samoan, gay guy living with HIV. I’m inspired by all of our survivors this issue—especially Greg, who makes me want to get back to the gym, too.

DIANE ANDERSON-MINSHALL EDITOR IN CHIEF EDITOR@HIVPLUSMAG.COM

HIVPLUSMAG.COM

IN THIS ISSUE M A R C H /A P R I L 2 0 1 7

GREG LOUGANIS PERFORMS IN THE SPRINGBOARD EVENT DURING THE 1984 LOS ANGELES SUMMER OLYMPICS. HIS PERFORMANCE WON HIM A GOLD MEDAL. HE WAS 24.

ON THE COVER 30 Golden Years

Olympic gold medalist, activist, author, trainer, and designer, GREG LOUGANIS is having the time of his life. Who says the kids have all the fun?

FEATURES 17 Boomers or Bust: Thriving After 50

Veteran ROY FERGUSON fought AIDS & PTSD. Retired teacher ASHA MOLOK hit the gym. ANTHONY GLOVER overcame red tape. Entrepreneur JIM CHUD has had 80 surgeries. STEVE ARRINGTON tackled stigma in the heartland. Nothing sidelined grandmother CHERYL FETTERHOFF . Activist ERIC MARTINEZ proves HIV doesn’t discriminate. Music manager DENA MICHELLE ditched dope, gained a rock star fiancé.

26 I’m Still Breathing

Pop star Sia’s gay manager, DAVID RUSSELL , just came out poz. Now he’s taking on HIV stigma—and Donald Trump.

46 Resistance Warrior

STEVE BARATTA is resistant to 90 percent of all antiretrovirals. He never lets that stop him.

COVER: MAARTEN DE BOER/GETTY IMAGES THIS PAGE: AP PHOTO/BOB DAUGHERTY

MARCH / APRIL 2017

IN THIS ISSUE M A R C H /A P R I L 2 0 1 7

BUZZWORTHY 8 Quad Wrangler

Tim Kelly helps teens stay safe in Illinois.

9 Black and White & Read All Over

Newspapers disproportionately demonize Black, immigrant men in HIV criminalization cases.

13 Better Than A Baking Soda Volcano

High school student offers a cure for HIV that could really (eventually) work.

14 Justice for Michael Johnson?

His 30-year conviction for HIV non-disclosure and transmission is overturned on appeal.

15 Hold Your Applause

Could mouthwash actually cure your STI?

16 Water Proof

Study shows drinking water at bars reduces risk of HIV transmission.

TREATMENT/TASP

36 A New Fix For an Old Problem

New drug treats HIV-related diarrhea.

37 Grandpa’s Got the Clap

Boomers are getting more STIs; condoms and PrEP would help.

38 A Two-fer

Replacing three drugs with these two doesn’t raise viral loads.

39 Aging Gracefully?

People with HIV are more susceptible to age-related diseases as they get older.

DAILY DOSE

43 Love is in the Air

Five tips for finding true love when you are HIV-positive.

BACK TALK

48 Laughter is the Best Medicine

SHUTTERSTOCK (GLASS); FACEBOOK (RUSSELL)

Poz actor Mike Hennesey credits comedy for his miraculous rebound from two T cells.

MARCH / APRIL 2017

editor in chief DIANE ANDERSON-MINSHALL SVP, group publisher JOE VALENTINO

50 years

on of award-winning HIV coverage.

art director RAINE BASCOS senior editor JACOB ANDERSON-MINSHALL managing editor SAVAS ABADSIDIS editors at large TYLER CURRY, KATIE PEOPLES associate editor DAVID ARTAVIA editorial assistant ELAINE MENDUS contributing editors KHAFRE ABIF, MARK S. KING mental health editor GARY MCCLAIN creative director, digital media DAVE JOHNSON interactive art director CHRISTOPHER HARRITY online photo and graphics producers LENNY GERARD, MICHAEL LUONG front end developer MAYRA URRUTIA traffic manager KEVIN BISSADA manager, digital media LAURA VILLELA director, integrated marketing JOHN MCCOURT managers, integrated marketing GRETA LIBBEY, JAMIE TREDWELL art director, integrated marketing PETER OLSON coordinator, integrated marketing RYAN WEAVER coordinator, integrated ad sales/marketing, CASEY NOBLE senior director, ad operations STEWART NACHT manager, ad operations TIFFANY KESDEN director of social media LEVI CHAMBERS 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 Here Media, PO Box 5236, New York, NY 10185 Phone (212) 242-8100 • Advertising Fax (212) 242-8338 Subscriptions (212) 209-5174 • Subscriptions Fax (212) 242-8338 LOS ANGELES EDITORIAL PO Box 241579, Los Angeles, CA 90024 Phone (310) 806-4288 • Fax (310) 806-4268 • Email editor@HIVPlusMag.com SOUTHWEST EDITORIAL OFFICES Retrograde Communications, 43430 E. Florida Ave. Ste. F PMB 330, Hemet, CA 92544 Phone (951) 927-8727 • Email support@retrogradecommunications.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., PO Box 241579, Los Angeles, CA 90024. 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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buzzworthy L I K E M A N Y STAT E S still struggling

HELPING THE QUAD CITIES BATTLE HIV AMONG HOMELESS YOUTH TIM KELLY IS FIGHTING HIV IN ILLINOIS AND IOWA, BUT HE CAN’T DO IT ALONE. 8

MARCH / APRIL 2017

after the recession, Illinois is facing budget shortfalls that have a serious downstream impact on The Project Quad Cities’ ability to continue their programming. Still, says Tim Kelly (pictured, far left). “Each year TPQC tests between 350 and 600 individuals for HIV. We refuse to allow the system to fail on the backs of the most vulnerable.” TPQC IS AN HIV service provider serving eastern Iowa and western Illinois, “approximately 165 miles west of Chicago and midway between Minneapolis to the north and St. Louis to the south,” explains Kelly, an outreach program manager who runs TPQC’s Viral for Your Survival program, aimed at one of those at-risk demographics: homeless youth aged 13 to 20. Despite funding issues, Kelly says, “TPQC has maintained an open door policy, which [we believe] is imperative to the community. If someone walks through our doors and is in need of some kind of services, we will get them to appropriate services.” Sometimes it feels like a losing battle. “Child, hopelessness is a major problem,” Kelly admits. The Quad Cities area of Illinois, he says, has seen a 30 percent increase of new HIV diagnoses. “I feel at times that there was not enough messaging,” Kelly says. He was often the only person in the region hitting the streets because of funding cuts. “It’s hard being a one man dog and pony show and teaching an entire region about safe sex, Planned Parenthood, PEP, PrEP, penises, and any other Ps I missed.” Kelly laughs, but doesn’t stay jovial for long. “Safe secure housing and food are another major problem,” Kelly continues. “Shelters are usually not an option for many we serve, due to trauma they experienced at a shelter previously. Most of them don’t trust in the system. Many times if we don’t accompany people to an appointment, they easily feel rejected and stereotyped. Service navigation and advocacy is such an important piece of what we do.” Kelly dreams of providing an emergency shelter, “because a lot of these kids don’t have a place to go and we don’t have youth housing or shelters.” Other initiatives he’s launched include a food pantry and a program addressing domestic violence and bullying within the LGBTQI community. Donor support remains critical for Quad Cities to do its work, including providing food, doctor visits, medication, transportation, and HIV testing. “We are the only organization within a 60 mile radius that has Ryan White part B care case management,” Kelly explains, “We are ramping up our efforts and innovation.”

— SAVAS A B A DS I D I S

BLACK BODIES, WHITE MEDIA?

SHUTTERSTOCK

hen watching local news stations report on HIV non-disclosure cases, it’s easy for the wider world to create a bias around HIV-positive Black men. Although most nondisclosure cases involve White men, studies show reporters often target defendants of color, turning their cases into a melodramatic crime story. A Canadian study “Callous, Cold, and Duplicitous,” showed that Black immigrant men living with HIV are disproportionately highlighted (and summarily demonized) in Canadian mainstream newspaper coverage of HIV non-disclosure criminal cases. Even though Black men account for only 15 percent of defendants, researchers found they are the focus of up to 61 percent of newspaper coverage. As a result, racial stereotyping and xenophobia is fueled and recycled within media outlets, creating a dangerous cycle of false information. “There is a seriously prejudicial coverage of cases in Black men that create a kind of a popular racial profiling of HIV non-disclosure as a crime of Black immigrant men,” lead researcher Eric Mykhalovskiy says. “You’d have no sense that most people with HIV take great care [to protect] their partners from transmission. You’d have no sense that HIV is extremely difficult to transmit, according to the current research. You’d have no sense that 40 percent of the conviction cases involved no evidence of transmission. You’d have no sense that it is anything other than a crime. Close to half of all articles in our sample focus on four cases involving different individuals. The same story being told over and over again in one form or another.” According to the report, 68 percent of the newspaper articles that researchers analyzed focused on racialized defendants. Immigrants and refugees received high amounts of coverage, even though they account for 18 percent of all HIV non-disclosure cases. In total, there were 1,049 articles featuring Black defendants, compared to 412 White defendants—over 2.5 times as much. In America, a number of states implemented HIV-specific criminal exposure laws during the early years of the epidemic, and groups including The Sero Project and Positive Women’s Network-USA frequently speak to how it’s common for prosecutors to turn a charge from a misdemeanor to a felony, simply because the defendant is HIV-positive. In fact, convictions around alleged HIV exposure and/ or non-disclosure are almost guaranteed.

According to the Williams Institute, of the 390 HIV criminalization incidences brought to trial in California, for example, 389 resulted in convictions. In addition, “White men were signiﬁcantly more likely to be released” without being charged in HIV-related cases (61 percent). Black and Latinx individuals were more likely to be charged, which is why they represented two-thirds of the state’s criminal cases involving the defendant’s HIVpositive status. Cases like Nushawn Williams are examples of how the media creates a monstrous image of Black HIV-positive men who are, as Mykhalovskiy describes it, “luring young White women to have sex.” (Or luring men, as the case may be.) So, why the overwhelming amount of coverage around Black men? “It’s interesting to try and consider why,” Mykhalovskiy says. “What happens is that these cases provide an opportunity to carry forward a kind of historical cultural fascination and anxiety with Black men and Black men’s sexuality—the whole idea of the ‘Black man’ representing some kind of sexual threat or danger to people.” To combat this, Mykhalovskiy suggests making sure reporters turn to organizations that care about HIV communities, using a spokesperson to quote for these stories. Journalists need to provide a more positive presence for Black men living with HIV, even though it’s almost impossible to quote a defendant (lawyers rarely want their clients to speak to the media). “We know most people don’t have intimate contact with this issue, so they rely on the media for their understanding,” he explains. “What is concerning is how narrow these stories are in representing [non-disclosure] cases. The men involved are completely silenced, and you have all this coverage about people talking about them in negative ways. They’re objectiﬁed and treated as objects. That way of representing things is a classic way of how racism is perpetuated in the media.” — DAV I D A R TAV I A

HIVPLUSMAG.COM

we stay Sure HIV treatment = Prevention #PlaySure

BE Sure, Play Sure, Stay Sure.

If youâ&#x20AC;&#x2122;re HIV positive, starting and staying on treatment can keep your viral load undetectable. Treatment keeps you healthy and makes it nearly impossible to pass HIV to your partner. Condoms offer additional protection against HIV and other STIs.

STAY SURE: Call 311 or visit nyc.gov/health/staysure to learn more about services that can help you get and stay on treatment.

Now That’s a Science Project Could this high school student cure HIV? Sam Pannek (pictured, middle), may have just come up with a way to prevent, or even cure, HIV. When he gets bored, Pannek, a student at Lakota East High, in Ohio’s Liberty Township, thinks about how to solve problem, like curing various diseases. “Freshman year I would do research on various medical conditions,” Pannek tells us. “A notable one being the beneficial mutation called CCR5 Delta 32 which made the carrier immune to a vast majority of HIV strains. During class I would let my mind wander and answer the questions that no one could answer for me,” presumably like how to cure HIV. “Sam was always thinking about this,” his science teacher, Jim Williams, told USA Today. “Sam had come up with a hypothesis: If proteins within HIV could be steadily fed into the body, as with an insulin pump, they might block the receptors in the T cells of the immune system and ward off HIV from infecting the body.” Eager to test out his theoretical solution, Pannek tried engaging with Johnson & Johnson Innovation, a sort of medical entrepreneur incubator their pharmaceutical division supports. In an email reply, the company thanked him for reaching out “for consideration of your idea for

innovation.” But, they added, they were unable to proceed because he was “seeking funding for student’s project.” Still, could his system really work? “The idea that you could attach something to the HIV receptor and block the viral entry, I think we’ve all been very interested in that concept,” says renowned HIV researcher Warner Greene. A pump that constantly floods the system with something (such as a protein) that attaches to the CD4 cells and blocks HIV could really work. But, Greene adds, “We don’t have anything that goes and seeks out CD4 and compromises its ability to interact with HIV, but still preserves the critical ability of CD4 to ... orchestrate normal immune responses. So, it’s an idea that is an interesting one, but reducing it to practice is a little difficult.” That doesn’t deter Pannek, who will be attending University of California at Berkeley this fall. “Curing HIV is something that is on par with the polio vaccine or smallpox inoculation,” he says. “I want to have an effect on the world we live in and save lives.”— SA

FLICKR/MIKKAL NOPTEK

IS THE NUMBER OF GAY MEN HAVING CHEMSEX GREATLY EXAGGERATED? In a recent issue of International Journal of Drug Policy, the British organization Sigma Research argued that health advocates should challenge the idea that drug use and chemsex are widespread in the gay community. Sigma pointed to new surveys showing European gay men who use drugs during sex are a minority, not the majority. In a separate study, researchers from Public Health England interviewed 519 men throughout 2013 and 2014, and found that only 12 percent reported having sex under the influence of recreational drugs: 10 percent being mephedrone (a synthetic amphetamine); 7 percent GHB/ GBL; and 7 percent marijuana. The data from Sigma Research displayed similar results. By far, the men who reported having

chemsex were more likely to live in big cities like London, where 14 percent of participants acknowledged recently engaging in chemsex. Chemsex was also more prevalent among men with HIV, 22 percent of whom acknowledged recently combining drugs and sex. While chemsex may be less ubiquitous than presumed, there’s still real danger in the use of drugs like GHB. For one, drug use is associated with higher risks of transmitting HIV. And, according to the January 2017 issue of Forensic Science International, the number of London deaths attributed to GHB climbed 119 percent between 2014 and 2015, an increase researchers believe is “at least in part due to increasing use of GHB for chemsex.”— DA HIVPLUSMAG.COM

BUZZWORTHY

30-Year HIV Non-Disclosure Conviction Overturned

he Missouri Appeals Court reversed the conviction of Michael Johnson, whose nondisclosure conviction helped galvanize the HIV anti-criminalization movement. Although Johnson won’t go free—he was remanded pending a new trial—the decision is still being hailed by activists. “This is a happy note of justice,” says Sean Strub, founder of The Sero Project, a social justice organization that co-sponsors the HIV is Not a Crime trainings, which teach activists how to help overturn outdated laws targeting those living with HIV. In 2015, Johnson, a former college wrestler, was charged with “recklessly infecting another with HIV” and four counts of “recklessly risking infection of another with HIV.” Johnson’s lawyer’s opening words to the jury were apparently, “You have to consider my client guilty until proven otherwise.” The judge reportedly corrected the public defender by saying, “I believe you meant to say ‘innocent.’” In a trial marked by racism, homophobia, and ignorance of medical science, prosecutors alleged that Johnson knowingly exposed his sexual partners to HIV by failing to disclose his status. Their claim was accepted in part because, as Steven Thrasher wrote on Buzzfeed, “prosecutors have in their possession what they consider a smoking gun: On January 7, 2013, Johnson signed a form

MARCH / APRIL 2017

... from the state of Missouri, acknowledging that he had been diagnosed with HIV.” After a speedy five-day trial, the jury only deliberated a few hours before finding Johnson guilty on all counts. Although he was given a total sentence of 60 years, the judge decreed that the two 30-year sentences be served concurrently. The lengthy sentences reflect the fact that, under Missouri law, HIV transmission is a Class A felony equivalent to murder, forcible rape of a child under 12, and first-degree kidnapping. Appealing the conviction, Johnson’s lawyers offered several arguments for why the decision should be overturned. The first was the fact that prosecutors withheld tapes of phone conversations that Johnson had in prison; conversations the state didn’t reveal it was using until days before the trial. The appeal also argued that Johnson’s sentence was unconstitutional, given what he was charged with (this argument is based on the fact that HIV is no longer a death sentence and therefor transmission of the virus should not be viewed as equivalent to murder). The Missouri Court of Appeals agreed that the prosecution not only failed to comply with Johnson’s discovery request, “the State’s violation of Rule 25.03 was knowing and intentional and was part of a trial-by-ambush strategy that this Court does not condone and the Rule 25.03 was specifically designed to avoid.”

SHUTTERSTOCK

Michael Johnson was sentenced to prison for allegedly not disclosing his status and transmitting HIV to a partner.

Those tapes turned out to be critical to the trial. In them, Johnson says he was only “pretty sure” he’d disclosed his status, acknowledged his hesitance to disclose, and expressed concerns he could have transmitted HIV to others. “The court’s reversal is based on the prosecutor’s misconduct,” explains Strub, “which raises questions concerning other possible improprieties in Michael’s trial. The prosecutor clearly wasn’t playing by the rules, and as a result, Michael Johnson, his friends and family, people living with HIV, and justice suffered.” In determining that the prosecution deliberately withheld the inflamatory evidence, the Appeals Court wrote, “We find that the trial court abused its discretion by admitting the excerpted recordings of the

phone calls Johnson made while in jail. Johnson’s ﬁrst point is granted, and we reverse and remand for a new trial.” The Appeals Court declined to consider the second argument, noting, “We do not consider Johnson’s second point on appeal, which relates solely to the constitutionality of Johnson’s punishment for an oﬀense for which he must now be retried.” In other words, by overturning his conviction, the constitutionality of his sentencing has been rendered mute. If he’s given a similar sentence, the court could consider the argument. In avoiding the question regarding sentencing, the Court leaves the constitutionality of the sentence unanswered, but also open for future appeals. James M. Dowd, the presiding

Can Mouthwash Prevent Gonorrhea?

LISTERINE: FLICKR/SPRITTIBEE

IN 1867, WHEN British surgeon Joseph Lister

published a series of articles in the British Medical Journal discussing the importance of sanitizing surgical instruments with carbolic acid before surgeries, he was unconsciously creating a new era for personal hygiene—one we’d be discussing 150 years later. In 1879, Lister marketed his own version of carbolic acid, Listerine. In doing so, it turns out, he may have also created a cheap and easy way to suppress gonorrhea. Originally developed as a surgical antiseptic, Listerine was later marketed as a ﬂoor cleaner and pitched as a cure for gonorrhea before antibiotics existed. Researchers at Melbourne Sexual Health Centre in Australia decided to put Lister’s boasts to the test. They publishing their ﬁndings in the journal Sexually Transmitted Infections. Researchers split 58 gay or bisexual men who’d tested positive for oral gonorrhea into two groups. One was assigned to rinse and gargle with Listerine, the other was given a saline solution. After comparing results, it was revealed that those who gargled saline still had 84 percent viable gonorrhea in the throat, while

judge concluded, “For the reasons stated above, we reverse the judgment of the trial court and remand for a new trial. “This is far from over,” Strub says. “But if the state chooses to retry him, which may be likely, Sero and many other community efforts will do our best to mobilize every resource available in Michael’s defense. A lot of people care about Michael Johnson. And their advocacy, concern, and love ... [is] a significant factor in bringing attention and legal resources to bear on his behalf.” Rather than accepting the court’s decision, in January, the State of Missouri has filed a motion for a rehearing in the Eastern District Court of Appeals, or a transfer to the Missouri Supreme Court.— JACO B

ANDERSON-MINSHALL

the group that gargled Listerine had only 52 percent remaining. “Our data provides preliminary evidence to support the further investigation of mouthwash as a non-condom-based control measure for gonorrhea,” lead researcher Dr. Eric Chow concluded. “Listerine mouthwash is a cheap, easy to use, and effective agent that inhibits gonorrhea growth and requires further careful consideration and study.” A larger study is planned to test whether the use of mouthwash can suppress the spread of gonorrhea altogether, as well as to calculate how long the effects might last. According to the Centers for Disease Control and Prevention, gonorrhea is especially common among young people between ages 15 and 24. The rates of gonorrhea among gay and bi men are rising again, something that is particularly concerning because a new strain of antibiotic-resistant gonorrhea has recently reached the United States. Since symptoms can easily misunderstood (like pain, fever, sore throat) or absent altogether, regular testing is recommended.— DA HIVPLUSMAG.COM

BUZZWORTHY WILL FREE WATER AT GAY BARS REDUCE HIV RATES? W H O K N E W YO U could solve a problem with something as

simple as water? New research from University of California San Francisco and the San Francisco AIDS Foundation found that when men are offered free self-service water at gay bars, not only do patrons leave less inebriated but—because the men make better choices about sexual health—HIV rates are reduced. According to the National Institute on Alcohol Abuse and Alcoholism, alcohol is associated with high-risk sexual behaviors and injection drug use, two major modes of HIV transmission. Allowing patrons easy access to water without waiting in line could make a difference in HIV rates in San Francisco, which has already seen a steady decline over the last decade. This new theory was successfully put to the test when two San Francisco gay bars allowed the research team to install free water taps with posters of attractive bartenders holding glasses of water that read, “Drink Like a Barman—Have a Drink, Then Water.” Researchers (funded by the California HIV/AIDS Research Program and the National Institutes of Health) compared alcohol levels of patrons leaving these bars with those from other bars who didn’t offer free water. Turns out, the ones with access to water were more sober when they left the bar. With hundreds of predominantly LGBT bars in the country, is free access to water what we’ve been missing in our mission to decrease HIV rates? That is up in the air, but it does prove that pacing your alcohol consumption has obvious benefits. “We want everyone to have a great night,” said co-investigator Jen Hecht, senior director of program strategy and evaluation at the San Francisco AIDS Foundation. “If people have a chance to pace their drinking, they have the opportunity to remember what happened in the morning. They can make choices they feel good about.”— DA

TIPSY TIPS The San Francisco AIDS Foundation recently launched a safer drinking campaign called “Cheers Queers,” which will expand this good water message geographically. The Foundation is also offering “harm reduction” counseling and support services through the Stonewall program to help those with binge drinking. It launched a weekly “Smart Drinking Group” for gay and bisexual men. Their experts offer helpful tips, such as taking only a limited amount of cash when going out and leaving debit and credit cards at home. They also recommend sticking to beer or wine, and skipping mixed drinks.

of men said they were gay, and…

said they were bi, but…

6.2%

had had oral or anal sex with another man

Source: CDC, National Health Statistics Reports, January, 2016

MARCH / APRIL 2017

SHUTTERSTOCK

Bro 1.9 % Jobs?

d e s p i t e m u lt i p l e d r u g r e s i s ta n c e s , s u r v i v o r g u i lt , a n d a i d s d i a g n o s e s , these poz folks prove you can do more than just survive hiv.

FLICKR/DOMINIKA WEISS

BY DAVID ARTAVIA SAVAS ABADSIDIS AND JIM CHUD

HIVPLUSMAG.COM

aging with hiv

R OY F E R G U S O N , 6 5 C H I CAG O

LIVING WITH HIV SINCE THE 1990S IN 2008, ROY Ferguson was laid off from the job he’d devoted 14 years to. No longer able to afford the premiums, he lost his insurance. Then 57, he went off antiretroviral medication for two years. His viral load skyrocketed to over 700,000 and his T cells dipped to under 28. He lost his home to foreclosure. Ferguson fell into a depression and was coming to a point of accepting his inevitable death. After all, when he was first diagnosed he was told he wouldn’t see 50. Now he’d surpassed that by nearly a decade. Instead of giving up, Ferguson found his way to the Edward Hines Jr. Veterans Administration Hospital. It was there, Ferguson says, he came back to life. After nursing him back to health, the Veterans Affairs doctors started him on his third regimen of antiretrovirals. Meanwhile, other VA providers helped Ferguson work through his foreclosure, homelessness, bankruptcy, and depression. Today, Ferguson is one of Chicago’s most 18

MARCH / APRIL 2017

outspoken activists. He’s lobbied federal legislators on behalf of those with HIV, and is currently a voting member of the Chicago Area HIV Integrated Services Council, which is part of the Chicago Board of Health. He’s even spoken with Illinois Governor Bruce Rauner about issues concerning veterans, the poor, and the HIV community at large. “I am a blessed man because of the good people at Edward Hines Jr. Veterans Hospital,” he says. “I carry the stories of my fellow HIV-positive veterans with me in everything I do now as I advocate for everyone who is living with HIV.” (Ferguson has chosen his words carefully, to make it clear “we are not dying” with HIV.) At 65, Ferguson has been living with HIV for over two decades. Partially due to his break in treatment, his HIV has become multi-drug resistant. He has “M184V, V118I, T215F, and M36I resistances,” which means he’s resistant to multiple classes of drugs including reverse transcriptase inhibitors (RTIs), protease inhibitors (PIs), and nucleoside reverse transcriptase inhibitors (NRTIs). He’s also been diagnosed with hepatitis C, a common comorbidity for those living with HIV.

aging with hiv Ferguson is now on his fifth antiretroviral regimen, this one a combination of Triumeq (itself a combo of abacavir, dolutegravir, and lamivudine) and Viread (tenofovir). Even with all that, he’s managed to get his viral load in control and is now undetectable, so he can’t transmit HIV to others. Still, Ferguson admits, he continues to see the obvious signs of aging, which affects how he monitors his meds. “I had a heart attack a year ago,” he explains, “but lots of men in their 60s with a family history of heart problems, and who are not HIV-positive, have heart attacks. I work out at the gym four to five times a week. The gym I go to in the morning is populated with men and women from mid-60s to their mid-80s, with one World War II veteran who is 94 and in the gym three days a week.

S T E V E A R R I N GTO N , 6 5 AKRON, OHIO

L I V I N G W I T H H I V FO R 3 1 Y E A R S .

va p r o v i d e r s h e l p e d h i m w o r k t h r o u g h his foreclosure, homelessness,

b a n k r u p t c y , r e s i s ta n c e , d e p r e s s i o n , and a viral load over

700,000.

The commonality is they, we, are all living well. Exercise is one of the best ways for those of us living with HIV to live the best we can.” This is a drastically different life compared to what Ferguson experienced when he first went on treatment in the 1990s. His first regimen of AZT and Sustiva worked well for him at the start, but after a year or so in treatment he began having central nervous system side effects due to Sustiva. In addition to “extreme grogginess in the morning and wide-ranging mood swings,” Ferguson says he had nightmares “where I was hurting myself or others. The dreams were very dark.” But when Ferguson shared his concerns with his doctor, he recalls, the doctor, “didn’t seem to react to my issues.” These nightmarish side effects were so disturbing, Ferguson says, he reached a point where he “would rather die than ever deal with the side effects [again].” He stopped taking the meds and soon ended up in the hospital. During that hospital stay, Ferguson recalls, he fired his infectious disease doctor. Ferguson argues that veterans, especially those dealing with post-traumatic stress disorder, shouldn’t be given Sustiva. He says the VA no longer prescribes efavirenz (the generic name equivalent) as a first-line HIV treatment. Now retired, Ferguson spends his time volunteering at the VA, the AIDS Foundation of Chicago, and the Chicago Board of Health. “I’m lucky and blessed to be able to do the work I do now—best job ever!” he says. “No pay, but the most rewarding work I have ever done.”

STEVE ARRINGTON, the CEO of Akron AIDS Collaborate, has been a community outreach worker for the last 20 years, speaking, testing, and overseeing various HIV programs. The 65-year-old, African-American gay man (“bisexual sometimes,” he adds) is one of Ohio’s most passionate HIV advocates. He also mentors homeless youth who have no place to go—a feeling he experienced first-hand when he was diagnosed in 1985, while living in Denver, Colorado, during his “coming out days.” His journey with HIV has spanned more than three decades, but the biggest surprise, he says, “has been coping with the ups and downs of HIV, then converting to AIDS. Perhaps the biggest surprise is getting health care with some kind of respect.” One of the earliest HIV survivors in his area, Arrington has developed resistance to numerous HIV meds, which has left him with what he describes as a “65-year old body that feels like it’s 95.” While healthcare has been an ongoing issue during his HIV journey, he always strives to be a warrior. Despite his aging, Arrington (an “old school” ACT UP activist) continues to fight for the underdog in his community with a passionate voice, hoping to break the stigma of those living with HIV. It’s a mission he will not be stopping anytime soon.

r e s i s ta n t to n u m e r o u s m e d s , h e ’ s cyc l e d t h r o u g h a i d s d i ag n o s e s . HIVPLUSMAG.COM

aging with hiv

FORGOTTEN WARRIOR T H E L A S T R E M A I N I N G S U R V I VO R O F O N E 1 9 8 7 A I D S C L I N I CA L T R I A L S P E A K S O U T. B Y J I M C H U D IN NOVEMBER 1977, while a sophomore at Yale, I came down with an infection. I had night sweats, a rash, mump-like swollen lymph nodes, and thrush. My symptoms subsided in less than two weeks, and I was discharged. Walking me out, my doctor said, “You probably had some sort of virus.” According to Science Magazine, a 2016 study indicated that in 1981, when Dr. Michael Gottlieb presented the first five cases of pneumocystis to the Centers for Disease Control and Prevention, there were already 250,000 people living with the virus. In the beginning, what was mistakenly thought to be a virulent, fast-acting virus was actually the disease proceeding along its course without intervention. I recently entered my 40th year of living with HIV. I’ve seen a lot over those years. I still have those PTSD moments seeing my friend Jerry in a foggedup oxygen tent, struggling to take every breath; each inhalation made painful and difficult by pneumocystis pneumonia. His last words to me were, “Don’t let it do this to you.” In 1987, I was living in Washington, D.C., and after two double blind studies at George Washington University, I drove to the National Institutes of Health and volunteered for whatever clinical trial would take me. I was 29, and not expecting to see 35. If I somehow hit the jackpot and the drug in my study was an answer to AIDS, then fantastic. If not, and the drug was useless—which was the more likely result—then at least I had done something concrete, even if it was just helping eliminate one of the failing therapies. The study I was in combined high doses of AZT and DDC, a new drug by Roche Pharmaceuticals. DDC, while effective in the test-tube against HIV, was very toxic, and put all 80 of us study participants through a whole host of side effects. The mouth sores were legendary. Eating required first gargling with Lidobenelox, a thick pink emulsion of lidocaine, benadryl, and Maalox. It resembled the hand soap in public restrooms, but it provided 20 minutes of pain relief. About five weeks into the study I experienced the side effect that would change my life forever. At a restaurant, I started dropping my utensils for no apparent reason. In a surprisingly short time I couldn’t open my mouth wide enough to put food in. Something was very wrong. The next morning, Sam Broder, then head of AIDS research at the National Cancer Institute, came into my hospital room and said, “You, know Jim, if you can just get past this side effect, the virus just hates this drug.” Through clenched teeth I replied, “This isn’t the quality of life we discussed.” 20

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aging with hiv He sighed, saying, “I guess you’re right,” and took me off the study. My symptoms resolved in three or four days. I was told at the time that my immune system had mounted an attack on my cartilage, and that my condition was a lot like rheumatoid arthritis. What no one realized at the time was how much damage to my cartilage had occurred, or that the process would continue for years at a subclinical level. What really surprised me at the time, was that they didn’t plan on monitoring me going forward. There was no funding for—and nothing in the protocol about—following people after the participation phase was done. It became alarmingly clear that we were considered disposable since we would probably die in a few years from AIDS. No questions would be asked about why we died. Being homosexuals made us that more disposable. In 2003, pain in my lower back and most of my supportive joints reached a point that drove me to an orthopedic surgeon, and the first MRI in 14 years showed so much damage to my spine that at first, the radiologist didn’t believe they were my films. In the 12 years since then, I have had over 80 operations on my spine, neck, and major joints to try to ameliorate the legacy of that clinical trial. I am now 7 inches shorter than when I entered the study, since all my disks are gone. There are more than a few people who, upon seeing me for the first time since my body building days, have no idea who I am until they hear my voice. In 2009, I first began to depend on a four-wheeled walker to be able to walk. I had no idea what being disabled or living with a disability really meant prior to that day. My drive to do something for other disabled people shifted into hyper-drive from that moment on. That same year, I heard that Dr. Robert Yarchoan, the head of the study in 1987, was still at the NIH, and that he had taken over as director of the Office of HIV and AIDS Malignancy at the NCI. I decided to call him and ask if NIH would see if they had any ideas for how to deal with my condition. “Hello Dr. Yarchoan,” I said. “This is Jim Chud.” After what seemed like a very long time Yarchoan barked, “Is this some sort of joke?” “No,” I replied. “What do you mean? Do you remember me, Jim Chud? You know, the big guy with the joint problems?” “No way! Really? Oh my God—it can’t be!” I could hear him yelling to someone, “Hey Kathy, you are not going to believe this, but Jim Chud is on the phone!” I told him that my condition was what I was calling about.

He stopped me to explain his surprise at hearing my voice. “Mr. Chud, do you know how many people there are that can tell the tale of what high dose DDC can do, and did, to them?” “No,” I replied. “You.” He said. “Period.” A chill ripped up my spine. I suddenly knew how loneliness really feels. I made arrangements to go back there for a work-up, and was reminded of just how humane the researchers at the NIH really are. He was concerned, happy, and eager to see me. He offered me any resources that the NIH might have. I was quite overwhelmed by the whole occasion, especially since I knew that the funds for my visit were coming out of his administrative dollars, and would not be covered by any study or drug company. Since that day, I have thought a lot about the other people in that study—and other studies. Those people volunteered for the task of saving lives and helping protect our nation from the ravages of the war against AIDS, much like our country’s soldiers volunteered in military conflicts across the world. Now, when long-term survivors really need help, there aren’t any Wounded Warrior associations available to help us. I get more than a little sad when I see how the AIDS warriors—the forgotten warriors—have been treated. I have had the resources to make a life for myself, but the vast majority of people, at least in my study cohort, were already further along in their disease, and were left to fade away. That is just wrong! The big drug companies that made and continue to make billions of dollars from the drugs that passed muster, were able to minimize their losses because of the men and women who, like myself, volunteered and received the drugs that failed. Those companies have never once reached out to any of us to offer a simple “thank you,” or to see how we were doing after our trial experiences. In my opinion, this is reprehensible. Apparently, the doctors from NIH agree. I learned early this year that they have filed a complaint with the FDA about the clinical trial practices of Roche, using my experiences as the example. This is the first time something like this has ever been done after a drug has been removed from the market. The work we do does matter. Jim Chud is the founder of Advance Abilities and former chairman of the West Hollywood Disability Advisory Board. He currently serves on the board of the National AIDS Housing Coalition. HIVPLUSMAG.COM

aging with hiv

h e ’ s h a d to f i g h t fo r b a s i c s e r v i c e s l i k e fo o d , s h e lt e r , a n d m e d i c i n e .

DON’T GET ME STARTED ON MEDICARE I am being double charged by Medicare. As an employee for various organizations, we were mandated to pay Medicare tax. I paid and now I’m having to pay again. Why?

A N T H O N Y G LOV E R , 5 1 P O U G H K E E P S I E , N E W YO R K LIVING WITH HIV SINCE 2000 TWO DOLLARS?! My biggest challenge is with obtaining proper medical care and the expense of buying health insurance here in New York. Because I’m over the New York state income limit by $2, I was denied medical and food stamp services. I was also denied for housing assistance—over two whole dollars. ON GETTING HELP I went and asked for assistance on how to fill out the application and was told by the intake officer that I would need to get online and ask someone to help fill it out. There was noone available to assist me with the application process. I then called Hudson Valley Community Services, which is a whole other story in itself. I first did my intake with the agency at the latter part of October. I will receive case management services as of next week. One of the most frustrating parts of trying to get assistance in New York is the lack of empathy, and lack of common courtesy in returning one’s phone call. I reached out to this agency for over two months. Finally, I had to inform them that I was going to report them to the Department of Health and Human Services for the lack of services that they were providing. The excuse was they were short staffed. After the initial intake, I did not hear anything from the Hudson Valley Community Services. I left messages requesting to speak to a supervisor several times to help me expedite my case. Finally, a supervisor called me and I was informed that I would have a case manager. 22

MARCH / APRIL 2017

THE REAL SHOCKER The biggest surprise I’ve had is living this long because I abused myself with cocaine for so many years and refused to take medication. DEALING WITH RESISTANCE On several occasions, I have experienced medication resistance and had to switch meds because the others did not work. Now I am on five different types of medication. OTHER COMORBIDITIES AND HEALTHCARE I have absent seizures. My copay is $75 and my monthly deduction is $150 to receive proper treatment with my neurologist and primary care physician. I would love to find resources to help me with healthcare expenses. I would appreciate if New York, as well as other states, would take into consideration that we—as working class individuals—have contributed to the tax base and when we are in need, we are ignored, denied, or discouraged from obtaining basic human services like food, shelter, and proper medical care. We shouldn’t have to be gouged by insurance companies. I was a mental health worker for 30 years for the state of New York and the federal government, as well as the private sector. When [newcomers]… have more access to public services than I do, when I’ve contributed to the pot for 30 years, it is not OK.

aging with hiv

a f t e r b at t l i n g r e s i s ta n c e , s h e ’ s u n d e t e cta b l e a g a i n .

CHERYL FETTERHOFF, 58 PA L M B AY , F LO R I DA L I V I N G W I T H H I V FO R 2 0 Y E A R S

CHERYL FETTERHOFF NEVER thought she would be doing HIV testing and education when she was first diagnosed herself in 1997. But this mother of two and grandmother of six has more courage than most women her age. Now 58, Fetterhoff gives back to her community by helping the homeless, working at juvenile detention facilities, and serving as a certified HIV tester and counselor. “I like doing this work and educating people,” she says. “There is so much misinformation out there I can straighten out when I hear it.” Fetterhoff was already dealing with diabetes before she was diagnosed with HIV. In fact, she found out she was HIV-positive while at the emergency room, after repeated doctor visits related to her diabetes. Doctors told her that her her viral level had escalated to HIV stage three, or AIDS. At the beginning, she says, “the biggest challenge was to learn as much as I could about HIV, since I had never known anyone that was HIV-positive before [my diagnosis]. It was all very scary and I didn’t tell my family for the first year.” By then, she says, “I learned all I could, and figured out that I was going to live and not die from this virus.” When she was first diagnosed, Fetterhoff was prescribed Viracept, the newest drug at the time. The three little blue tablets in each dose were very hard to take, she recalls, because they dissolved instantly, leaving her foaming (blue) at the mouth. The sight was hard for her daughters to

watch, so Fetterhoff started taking the meds in another room. She also got diarrhea, a common side effect of antiretrovirals; getting used to it, she says, “was an adjustment.” But Fetterhoff put up with it. “The meds did work and got my T cell count to over 200 from 23,” she recalls. Eventually her viral load reached undetectable levels. “That was great! It meant they were working.” But after a few years, she says, things changed. One day, the diarrhea stopped. At first she was thrilled. “But at my next doctor visit, my T cell count had dropped and my viral load had gone up. Viracept had stopped working and I had to change my meds. This was very scary to me.” Fetterhoff had developed a resistance to the medication. Thankfully, she was switched to medication that did work. That treatment immediately turned her health around. Having kept her diagnosis secret from family and friends in Buffalo, New York, she came out about her status once she moved to Palm Bay, Florida, where she resides today. “I didn’t know anybody [in Florida], so I didn’t really care who knew I was positive and who didn’t,” she adds. “Today I am involved in every HIV event and group I can find. I try to help as many other people as I can to not feel alone in this struggle. It surprises me how comfortable I am with talking about HIV and sharing new things that are coming out to help people living with HIV and others.” HIVPLUSMAG.COM

aging with hiv

h i v d o e s n o t d i s c r i m i n at e — n e i t h e r d o e s t h e s h a m e , f e a r , a n d i s o l at i o n f e lt i n a n y other demographic.

AIDS—and so was the gay community. President Reagan reinforced the [slogan] “silence=death.” HAVE YOU EVER BEEN UNDETECTABLE? Yes!

ERIC MARTINEZ, 55 V E R O B E AC H , F LO R I DA L I V I N G W I T H H I V FO R 3 1 Y E A R S W H A T ’ S A G O O D Catholic boy doing in a place like this? If you’re talking about Eric Martinez, the president and co-founder of Florida’s Positive Mind and Body Support Group Network, the answer is supporting other HIV-positive people. Martinez, a 55-year-old Latino widower, is among the group rarely heard from when it comes to HIV activism. He’s a straight man. The South Bronx, New York, native who has been living with HIV for 31 years, tested positive at the height of the epidemic. We asked what his experience has been like. YOU’VE BEEN LIVING WITH HIV SINCE 1986, RIGHT? I tested positive during that time. I was sick a lot with the flu, pneumonia, tuberculosis, cat-scratch disease. I was attending a TC rehabilitation, in-patient, with another 200 addicts. (Note: Therapeutic communities, or TCs, are a common form of long-term residential treatment for substance use disorders.) WHAT WAS IT LIKE FIGHTING HIV DURING THE REAGAN YEARS? Many don’t know how hard it was to fight Washington, especially Reagan’s cabinet, President Reagan, and [his wife] Nancy. People were dying rapidly and Nancy’s “say no to drugs” campaign gave the appearance that drugs was one of the major causes of 24

MARCH / APRIL 2017

HAVE YOU HAD TO DEAL WITH RESISTANCE? Yes, I have had to change drugs many times—and am waiting for another generation of antiretrovirals in the next three years, because I have significant side effects right now. HOW MANY DIFFERENT DRUGS HAVE YOU BEEN ON TO FIGHT HIV? About 15 antiretrovirals, everything from AZT to DDI to present [meds]. (Editor’s note: azidothymidine (AZT) and didanosine (DDI), were the first and second drugs approved to treat HIV and AIDS.) DO YOU HAVE ANY OTHER CONDITIONS RELATED TO YOUR IMMUNE SYSTEM? Yes, I have had several opportunistic infections recurring in the past several years. LATINX FOLKS LIVING WITH HIV HAVE TOLD ME THEIR FAMILIES HAVE BEEN KEY TO STAYING HEALTHY. DID YOUR FAMILY PLAY A ROLE IN YOUR TREATMENT? Yes, they played a role. They were positive, as best as possible, considering it was the early stages of the disease. They reacted with shock and fear. HAVE YOU EXPERIENCED AIDS SURVIVOR GUILT OR POST-TRAUMATIC STRESS DISORDER FROM THOSE EARLY YEARS? Yes, of course, how can you not have PTSD or survivor guilt when so many have died and many of them were friends? Because of them we have the guilt, but also the will to fight on in their name. YOU’RE OF A GROUP THAT WE RARELY HEAR ABOUT WHEN WE’RE TALKING ABOUT HIV PREVENTION AND TREATMENT: STRAIGHT MEN. DO YOU FEEL LIKE HIV ORGANIZATIONS REACH OUT TO GUYS LIKE YOU? Not many. When I do encounter a straight, positive man, I find their need is great. HIV does not discriminate—neither does the shame, fear, and isolation felt in any other demographic. It is universal.

Find out more at PositiveMindandBody.Wordpress.com

aging with hiv

A S H A M O LO C K , 6 6 PHILADELPHIA

LIVING WITH HIV SINCE 2001

she’s switched meds t h r e e t i m e s i n 15 y e a r s

NANCY ASHA MOLOCK has never faced a challenge she didn’t meet head on. Following a 29-year career as a schoolteacher in Philadelphia, she became an advocate with the Positive Women’s Network, and she divides her time between caring for her special needs son and her aging mother. She chronicled her experiences in her first book, Gaining Strength From Weakness: 101 Positive Thoughts for HIV-Positive People. Molock says her biggest challenge was trying to keep her status a secret from family and friends. “Going through the trouble of hiding my status was stressful,” she says, “and just as detrimental to my health as HIV itself. After disclosing my status, I received much more support from family and friends than I ever imagined. On the other hand, people still believe outdated myths about how HIV is transmitted.” Diagnosed 15 years ago, Molock was already 51, an age where the body’s immune system begins to slow down. And since high blood pressure is hereditary in her family, she’s currently being treated for hypertension. “I fight very hard to keep at bay the other age-related conditions—like diabetes, high cholesterol, and heart disease—that can be aggravated by HIV,” she explains. “I’ve changed my lifestyle to include weight training and other exercises, wholesome plant-based eating, no smoking or alcohol, more rest and sleep, massages, and other self-care practices that I feel will keep me healthy. HIV is manageable with medications and I can live a long life if I don’t succumb to any of the other chronic health conditions.” Unlike others her age, Molock has never had to deal with drug resistance or adherence slips, but in the early stages of her diagnosis she did have to switch medications because one treatment caused her “horrific” nightmares “It’s always difficult changing meds,” she adds. “Sometimes you have to get used to a new set of side effects. I’m on my third regimen in 15 years. Last year I asked my doctor if I could switch to one pill a day. So far, Triumeq has been great. I’m tolerating it very well.” (CO N T I N U E D O N PAG E 4 5 )

HIVPLUSMAG.COM

BY DAVID ARTAVIA

BIRD SET FREE DAV I D R U SS E L L I S T H E G U Y B E H I N D O N E O F P O P M U S I C ’ S B I G G E S T S TA R S , B U T C O M I N G O U T H I V - P O S I T I V E A N D B AT T L I N G S T I G M A F I R S T - H A N D M I G H T B E H I S B I G G E S T AC C O M P L I S H M E N T .

ia is one of the most successful pop stars in the world. The enigmatic bisexual singer and songwriter began her rise to the top in the early-2000s with an unprecedented leap of success in 2010, due to successful collaborations with David Guetta, Rihanna, and Flo Rida. Her seventh album This is Acting gave the Australian-born pop star her first Hot 100 number one single, “Cheap Thrills” (chances are you’re hearing it on a radio near you) and her performance at Coachella last year was hailed as “one of the greatest” by critics and fans, who turned it into a viral sensation. For a younger generation, the camera-shy Sia—who is often seen only through a face-covering smattering of black and blond bangs—has become synonymous with mystery, which is seldom seen in today’s social media obsessed world. But perhaps Sia’s biggest mystery has to do with her manager, David Russell. Just as it is for Sia, music has always been at the crux of Russell’s life. After graduating college in 1998 with a degree in musical theater, he immediately landed the tour of West Side Story. When it ended up being less than thrilling, Russell vowed never to do theater again. Instead, he found solace in the music industry, his “real passion.” Russell worked as a publicist in New York City before transitioning into music management, where he’s been for the last 17 years. In his career, he’s worked with superstars like Jack Johnson, Robbie Williams, and Sia, the artist he’s 100 percent dedicated to right now. When he does something, he does it big—including coming out about his status, which he did publicly on Facebook in the summer of 2016. Russell’s announcement was welcomed with admiration from music insiders and regular people alike, but few know the 14-year long journey it took to get there. He was 15 when he 26

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came out as gay to his family and friends—a rare thing to do in the early 1990s at the height of the AIDS crisis. His parents were incredibly supportive, which gave him, as he puts it, “the wherewithal and sense of self” to be bold and courageous in the face of adversity. That’s the same foundation he relied on to help him confront his HIV diagnosis at 26, and come out publically when he turned 40. Growing up under the specter of AIDS, teenage Russell thought an HIV diagnosis was a death sentence. Like a lot of young gay and bisexual men, he spent much of his adult life concerned with contracting HIV. So, he took it upon himself to become well-versed in HIV prevention. T H AT A L L C H A N G E D I N 2 0 0 2 . “I got what I thought was strep throat or the flu, and it got worse,” he recalls. “When I got back to [Los Angeles] it was so bad I didn’t know what to do, because I’d never been that sick. I really didn’t have any reason to believe it was HIV. I had to go to the hospital because I was dehydrated. They did a rapid HIV test and it was negative. They mentioned offhand they were going to do a viral load test, which was fairly new at that point.” Russell left Cedars-Sinai, the largest nonprofit hospital in the western United States, thinking it was a bad strain of strep throat. That’s what his healthcare providers assumed. But on the day before Thanksgiving, he received a call. “When he said it was [my doctor], I knew I had HIV,” Russell recalls. “I just knew instinctively. He said, ‘Are you somewhere you can talk?’ I said, ‘No I’m not, but are you going to tell me I’m HIV-positive?’ He said ‘I’m afraid I am.’ At that point everything seemed to go blank. I was completely in shock. It knocked me off my feet. I was on my knees basically. I didn’t understand how I could have contracted it and I didn’t understand how I was going to live a normal life. Not because I thought I was going to die, because

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S O C I A L S T I G M A , R E J E CT I O N A R E H A R D E R TO D E F L E CT. “It’s really hard and it happens on both ends by the way. A serodiscordant relationship can be diﬃcult from a sexual perspective, or could be, I should say. PrEP has made a lot of those concerns and fears [obsolete]. When you’re with an undetectable partner, the likelihood of contracting 28

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HIV is nil, but those facts don’t often translate when you’re in a relationship, for whatever reason. I found myself many times to be in longterm relationships where my status and their status being serodiscordant created a variety of issues and problems. I’ve never shied away from my status, and I’ve never shied away from questions and intimacy around my status.” One way to combat stigma, Russell says, is by knowing our history. He’s a fan of David France’s riveting book How to Survive a Plague. Highlighting the early battles against the AIDS epidemic, the book is based on France’s Oscar-nominated documentary film. Russell says, as a 40-year old HIV-positive gay man, there is a responsibility to not only learn about the men who came before him, but to share the wisdom with younger generations. “When I think stigma [around PrEP], I think about the hundreds of thousands of men that came before me who would have dreamed to have a pill that would protect their partners from contracting HIV, or protect themselves from contracting HIV from their partners,” he says. “I can’t believe we’ve reached this utopia in a certain way, and gay men aren’t willing to embrace it wholeheartedly.” Russell thinks the country’s sexual baggage affects our sense of healthy sexuality, even today. “Why shouldn’t people have as much sex as they want to have? Why shouldn’t responsible adults be able to connect with other responsible adults physically, without barriers if that’s possible? There has always been and will always be—as long as we live in a society dominated by a religious culture—a sense of shame and regret around gay sex. I think gay men perpetuate it as much as heterosexuals,

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at that point I knew it wasn’t a fatal illness, I knew there was treatment. I just didn’t know how I was going to find happiness and self-esteem.” The journey to find personal value is a universal struggle, but it’s especially relevant when you’re first diagnosed. Like many gay 26-year olds, Russell derived a great deal of his self-esteem from his sexual expression. Becoming positive forced him to look at life in a different way. “[Dating] was really hard at the beginning,” he reflects. “I didn’t know that many people when I moved to Los Angeles. I put a lot of selfworth in my own identity as a young gay man. I’d thought of myself as a very sexual being and I got a lot of self-esteem from having sex. When I was diagnosed with HIV, I sort of—in the moment—thought my sex life was over. Everything seemed to fall away because of that. If I wasn’t going to get my self-esteem from other men by making me feel sexy, how was I going to gain it? I don’t feel the same way now, of course. The world has changed and therefore my perspective has changed wildly, but in the winter of 2002, I was distraught. I didn’t know anyone else who was HIV-positive.… If I could [give advice to my younger self now] I’d tell him that your future is brighter and better, and more full of love and intimacy and acceptance and community than you could ever imagine.” Russell started from “ground zero,” he says, in regards to reclaiming himself after the diagnosis. He hardly knew anyone in L.A. at the time, and the only person he knew had HIV in his whole life was a friend from high school who died of AIDS complications when Russell was 20. After a while, he felt a need to find community. “I tried to integrate myself in some kind of HIV community. I really wanted to find a sense of community to figure out how I can go on with my life,” he says. “That’s important to have. There needs to be understanding that there is life, there is gratitude, love, intimacy, and it can meet your demands. You don’t need to sacrifice your self-esteem or your self-worth just because you’re HIV-positive. I wouldn’t have been able to gain that perspective had I not met other HIV-positive men who were going through that experience also.”

Snapshots through the years (from left): Russell with Cyndi Lauper; on vacation; with Sia and the Sesame Street crew; in activist garb; on-set with dancer Maddie Zeigler; and with Sia.

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if not more. We’ve been told for so long that the sex we have is bad, and the repercussions [are] bad, and we’re going to hell, and AIDS is a curse from God, etc. Well, if you grow up in a world where that is the permeating idea and you’re exposed to it every single day, it’s impossible to avoid taking that on. I think the shame around PrEP has to do with people being ashamed of gay sex.” B U T W I L L P R E P C H A N G E A L L T H AT ? “We’re at the very beginning of our liberation, really,” he insists. “I was alive when homosexuality was [still] considered to be a psychological illness, so [our acceptance] is so new. Our history has never been told, and if it’s been told it’s been told under the shadow of a homophobic, religious, heterosexual background. We’ve never had our proper history told, we never had a proper sense of it. We’re just gaining that now. The two generations ahead of mine, and a good portion of my generation, were completely decimated by AIDS. They’re gone. They’re not here to tell the story.” Russell argues that even though gay and bi men don’t have a sense of their collective histories, they inherited a great deal of baggage as both HIV and AIDS became synonymous with “gay” at a time when being gay—or having gay sex at least—was still against the law in many areas, even in the U.S. “There was so much antigay rhetoric in the world. So you got this disease that’s killing people attached to a community that’s viliﬁed and unaccepted the world over, and ACT UP, Peter Staley, and Larry Kramer, all these men that came before us, somehow managed in

the face of total impossibility to [fight back]. I mean, I’m alive because of those men. There’s no question, I’m alive because of men like Peter Staley.” In Russell’s own industry, he says homophobia has always been a struggle for artists, even today; but that didn’t stop people like Elton John, George Michael, or Boy George from dominating the music scene. “Freddie Mercury couldn’t be out of the closet because of the time we were in, but he was everything except out of the closet,” he says. “You’d be hard-pressed to look at Boy George, or George Michael, or Freddie and look at their work, their connection to the audience, and say they were ‘lying.’ Even Boy George, in a cloak of drag-meets-punk aesthetic, was still putting himself as a human being out there. I think we’ve always had gay superstars, and we’ve had hetero superstars who bit gay superstars’ style and reaped the benefits of that. Do I think the world is ready for a gay superstar who’s exclusively gay, writing about men and putting men in their videos? I don’t know the answer to that. We haven’t seen it yet” It’s clear we are living in a different age. When it comes to social media, the age of keeping secrets is virtually gone. “If you’re gay and carrying on in the closet, it’s going to be revealed,” Russell says. “There’s no secrecy in that sense anymore. You can’t orchestrate a heterosexual marriage like you could in the ’90s.” It’s certainly no secret how Russell feels about the Trump presidency, either. Vice president Mike Pence is responsible for the worst HIV outbreak in Indiana’s history—because he refused to give funding to HIV prevention, and chose to support gay conversation therapy—but red state voters still rallied around him. “Pence is a monster,” Russell says. “And that administration is monstrous on many levels. It’s horrifying. When you have an administration that doesn’t respect gays and lesbians, Black people, or any other minorities; you potentially have a life-threating fight for your life on your hands. It’s important to stay vigilant. Just like HIV itself, it’s important to realize how far we’ve come. I’m going to stay vigilant, but I’m not doing that at the expense of the truth. We’re living in a country where HIV meds are affordable. [HIV is] not a death sentence. It’s completely manageable. I think the same goes for our community. We may be facing down a monster, but we must not forget the truth: We are equally citizens and we must continue to fight against discrimination.” HIVPLUSMAG.COM

BY DIANE ANDERSON-MINSHALL

H E ’ S T H E M O S T D E C O R AT E D D I V E R I N O LY M P I C H I S TO R Y , B U T G R E G LO U GA N I S I S S O M U C H M O R E T H A N T H AT. L I V I N G W I T H H I V FO R N E A R LY 3 0 Y E A R S , LO U GA N I S H A S B AT T L E D E V E R Y T H I N G F R O M A D D I CT I O N A N D H O M O P H O B I A TO D E P R E SS I O N A N D B A D B OY F R I E N D S . N OW 5 6 , H E ’ S A N ACT I V I S T I N LOV E , D I V I N G I N TO CA R E E R N U M B E R T H R E E ( O R FO U R ! ) , A N D S H OW I N G K I D S A R O U N D T H E G LO B E T H AT YO U CA N B E LG B TQ ( O R H I V - P O S I T I V E ) A N D S T I L L H AV E T H E B E S T L I F E E V E R .

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AP/JAE C. HONG

Louganis in Fullerton, Calif.

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’M NOT A SPORTS

games—was 24. But on my TV screen, he still looked baby-faced and shyly beautiful, a tanned California boy who was both rock hard and lithe, his Samoan-Swedish features almost masculine but without a visible pore on his lovely, youthful face. Rolling Stone’s Tracy O’Neill perhaps best described what he looked like flying through the air back then. “His best dives represent controlled chaos—his arms floating up so that his body forms a cross, a brief flutter, and then, with Balanchine’s abrupt veering between slow and quick motion, a sudden leap through the elements: the earth of the board, a skypricking pinnacle and one, two, three-and-ahalf tumbles, all before his outstretched body penetrated the water like a javelin,” she wrote. In 1984, Louganis won gold medals in both the springboard and the platform— something no Olympic diver had done since 1928—with record scores that towered above his competitors. It was clear to everyone that the teen prodigy had matured into one of the greatest athletes in diving history. He was even honored with the Sullivan Award, granted to America’s best amateur athlete. My friend Jim, a lifeguard and swimmer a few years older than me, saw something more

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person. It’s not that I didn’t want to be athletic. In high school, I swam, ran track, and played volleyball for a hot minute, but I wasn’t really good at any of it. So I became a mat maid, ball girl, and statistician for the boy’s wrestling, tennis, and baseball teams, respectively. It turns out I’m a much better ﬂuﬀer than I am an athlete. But I spent the summer of 1984 sitting on a sofa with my friend Deawn glued to the summer Olympics. Largely that was because McDonald’s had this promotion going called “When the U.S. Wins, You Win,” and when you bought food you got a scratcher ticket with the name of an Olympic event on it. If America won, you won free food. The whole thing went down in history as one of the biggest marketing blunders ever. Russia boycotted the Olympics that summer, and Americans won a lot of Olympic medals. I ate a Big Mac at least once a day, usually twice, every day for a few fat-happy weeks. That summer, champion diver Greg Louganis—who had won a silver medal as a 16-year-old at the 1976 Montreal Olympic

MARCH / APRIL 2017

PREVIOUS PAGE: AP/GEORGE BRICH; THIS PAGE: TOP, AP/JORDAN STRAUSS; BOTTOM, AP/MICHAEL OWEN BAKER

than an amazing athlete when he looked at Louganis. He saw a young closeted gay man like himself. It would take a few years to put a name on it, and another decade before Louganis would admit it to the world. By then, Jim had died of AIDS complications, and Louganis was HIV-positive. Many of our friends, both Louganis’s and mine, passed away around us over the next decade. Today, younger athletes like Michael Phelps may dominate Olympic coverage (and get more sports trivia callouts). But consider this: Louganis took home five medals (four of them gold) from three Olympic Games. If he had been allowed to compete in Russia in 1980 (the year America boycotted the Moscow games), it’s likely he’d need an even bigger mantle. With more than a dozen additional awards (including world championships) under his belt, Louganis remains the most decorated diver in U.S. history. He was the first diver in an international competition to receive perfect 10 scores from all seven judges. He was the first to receive 700 points in both diving events in the same Olympics. Today, Louganis is more than an Olympian. His coming out memoir, Breaking The Surface, was a New York Times bestseller that became a film of the same name. He’s a philanthropist, speaker, and activist. He’s become a beacon of hope for LGBTQ youth. Does he ever think, wow, I’ve had an amazing life, I can just coast now? “No, there is always something to challenge yourself,” he says. “That is why it is important to make trips to places like Russia, and other places that are in desperate need of education.” Last year, when Cheryl Furjanic’s documentary about Louganis’s life, Back on Board, was shown at an LGBT film festival in Russia, Louganis did an hour-long Q&A session at a local bar. The athlete-turnedactivist wanted to be there, to offer guidance to young people in Russia who, he says, still believe that their country, too, will evolve on LGBT rights and same-sex marriage. He told The Advocate’s Lucas Grindley late last year that Russia’s anti-LGBT atmosphere “kind of trickles down into other kinds of social issues,” including the skyrocketing HIV rates. Official reports suggest Russia represents two-thirds of all the HIV cases in Europe. Louganis thinks the rates are even higher. “I think a lot of the numbers that they have are just guesstimates.” Back in the U.S., Louganis has never been one for sitting around. Even after he moved away from diving, he took to writing, and then dog competitions, and eventually back to diving as a trainer and coach. He’s helped the next generation of divers win at numerous championships, including the recent Olympics. And when he’s offered a chance to dive for charity with younger guys,

he generally has gone speedo-to-speedo with them and continued to shine. When Louganis and the U.K.’s diving Olympian, Tom Daley, headlined an event called Last Dive—in which they did a synchronized platform dive off the iconic tower from which Louganis once trained with legendary coaches Ron O’Brien and Sammy Lee in Mission Viejo, California—just before the tower was torn down—the duo had perfect and stunningly beautiful form. Louganis got to really show his stuff last year, as well, posing nude for the ESPN body issue; naked and flying through the air and water like he was born there. When the issue hit stands, it was clear he out shined athletes 20 years younger than himself, in part because his body is as amazing as it was 40 years ago.

O P P O S I T E PAG E:

Louganis dives off the 10-meter platform in Mission Viejo in 1978

T H I S PAG E: TO P ,

Husband Johnny Chaillot, left, and Louganis hug and ham it up at on the ESPY Awards’ red carpet. B OT TO M , Greg, as grand marshal, and Chaillot, wave to the crowd at the 128th Rose Parade in Pasadena, Calif.

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MARCH / APRIL 2017

COURTESY OF GENERAL MILLS

“At first it was very nerve-racking,” Louganis says about getting naked to dive in front of a camera. “But the crew were so professional it felt safe and was rather exhilarating.” (He’s the kind of guy that still blushes when you tell him his body remains very much on fleek.) Like many of his fellow long-term survivors, Louganis—who has been HIV-positive nearly 30 years now—has had his ups and downs with treatment. “I think having been diagnosed in 1988, I have been on every treatment possible,” he says. That includes taking part in a number of research studies and clinical trials. “The double-blind test studies grew too emotionally uncertain to me that it was not a good thing for me,” he admits. And, like many, he struggled with side effects and switching meds, too. “I did go off my meds for quite a while once the protease inhibitors came along. The side effects and dosages were very difficult to adhere to. I dropped to 11 T cells and a viral load in the millions. I felt fine, but I knew I had to do something.” Eventually finding the right provider, someone who was also HIV-positive, made all the difference in his treatment, he says. “I found a wonderful doctor who was about the same age and diagnosed around the same time. We could speak candidly about every aspect—resistances as well as livability of the treatments.” And, if the ESPN shots weren’t proof, Louganis adds that his health is very good

now. “For quite a while now, I have been viral load undetectable and my T cells have never been higher. There are still meds I am resistant to, but my regimen has been tolerable and relatively easy to manage.” That health has afforded Louganis a chance to see a career resurgence of sorts, a second (or third of fourth) act. “I have had so many varied experiences after my retirement from my sport,” Louganis admits, including acting (primarily in theater), training dogs, and competing in dog obedience and agility competitions. Each offered him “a certain amount of success. I never really stayed idle. I just got very much involved with a lower profile sport with my dogs—the reason my second book was a canine care book, For the Life of Your Dog, with Betsy Siino. If my calendar isn’t filled, I fill it.” Last year, after Back on Board came out, Louganis admits he had a “resurgence of recognition,” for which he thanks the film’s producers Cheryl Furjanic and Will Sweeney. That recognition included a long overdue honor. After fans launched a social media campaign, General Mills put Greg Louganis on the Wheaties box. It was the type of sponsorship straight Olympians (like Mary Lou Retton) got all the time, and something that fans thought should have been offered Louganis back in 1984. It never was, in large part because he was gay. Numerous athletes, from Retton to Mia Hamm to Michael Jordan (who’s appeared on the Wheaties box 18 times), graced the cereal box in the decades Louganis waited for his turn. “I know many people’s reaction was ‘it was about time,’ he says. “But in my view, I felt it meant more now than it would have then. I feel I am being embraced and celebrated as a whole person and not just an athlete.” Louganis was also celebrated as one of three grand marshals for the 128th Tournament of Roses Parade in California, alongside swimmer Janet Evans and sprinter Allyson Felix, two other Olympic medalists. The 2017 parade was themed “Echoes of Success,” which the Rose Parade committee said, “tells the story of how our character has developed through the selfless contributions of others and celebrates their inspirational gifts. It is a celebration for those people, institutions and organizations that help in the success of others.” Detailing their vision of what success means, the parade organizers added, “Our successes are unique to each of us. Success is not gauged by the final score, not by how much wealth we accumulate and should not be weighed against the accomplishments of others. Success is measured by our own personal satisfaction in knowing that we achieved our utmost by doing our best when facing challenges. But success cannot be achieved alone. We need the support and influences of others. Family, teachers, friends, and coaches contribute to our success. The cheering section at the finish line. The hospital volunteers. The teacher who stays after school to help a struggling student. The parents who drive to all of the soccer games. The little sister who says, ‘You can do it.’ These influences in our lives, these people of selfless commitment, these ‘Echoes of Success’ make us who we are.” Back when Louganis was first diagnosed (and not expected to live past his 30s) it would have been hard for him to imagine that someday—if he just took his antiretrovirals and kept his immune system in check—he’d live

O P P O S I T E PAG E:

Louganis on the Wheaties box

B E LOW: Louganis,

COURESTY OF DOC NYC

Chaillot, and their Jack Russell Terrier, Nipper, with Back on Board producer/director Cheryl Furjanic at DOC NYC

to become the ﬁrst out gay (and out HIV-positive) grand marshal in the storied parade. “Being a diver, who is out and open about my sexual identity, married—celebrated three years this past October to my husband—I think it is amazing to be a part of the 2017 Rose Parade’s ‘Echo’s of Success,’” he acknowledges. Leading a parade that is an American institution less than a decade after same-sex marriage was legalized and mere decades after gay sex was decriminalized, isn’t lost on him. “I guess [what this means] to me—for every LGBTQ youth and contemporary, that you can do and be a part of anything, giving hope to those who may be struggling,” he says. “Now is the time that we all come together—Indigenous people, Muslim, women, Jews, loving Christians, as well as people of color, and LGBTQ people—to come together and support each other and

to protect our environment for the generations to come.” Louganis and his husband turned out to be unexpected stars on TV and social media the day of the Rose Bowl. It’s one of many great days the athlete is having in 2017. He’s also launching an active wear line, beginning with swimwear for young, body-conscious athletes. “The design is a rather niche market for the bathing suit,” he admits, “but I have bigger plans as I get older. I want to stay active, so we have many plans and designs coming down the pipeline to this new venture. I want to focus on health, wellness, staying active, and of course stylish.” At 56, Louganis is ﬁnally, oﬃcially, a brand. And that means speaking engagements and writing (next up: an autobiographical musical titled Hero), as well as traveling, fundraising, and the occasional awards gala. Last fall, he was given the Changemaker Award from AIDS Service Center NYC. The

organization (which just changed its name to The Alliance for Positive Change) helps New Yorkers living with HIV stay housed, healthy, and self-suﬃcient. (Last year’s 25th anniversary gala also honored New York Governor Andrew Cuomo and attorney Joseph Saltarelli.) As a kid, Louganis says his mom told him he should strive to leave every place he went better for his having been there. That’s a lofty goal, even for a man used to soaring 33 feet in the air. But it’s one Louganis says he is doing his best to reach. For one thing, this long-term survivor has always been accessible to fans, youth, LGBT, and HIV-positive folks. It’s more than just important to him. It’s a mission. He’s been particularly open to people with HIV, and young queer and trans people. It weighs a bit on him, the responsibility he has as a role model. Louganis says, he can only speak to his own truth. But the truth is, he does more. He shows up. Louganis told NewNextNow that “the hardest for me is I have a lot of guys who just seroconverted and they’re scared. I get a lot of that. I’ve gone to a number of their doctors’ appointments when they’re talking treatment options, because I’ve been on just about everything. It’s been 25 years. I just share my experience. I don’t know anything else. I’m not a doctor or anything else, but I can be there for support. It’s tough enough to get the news, but then when your doctor is trying to discuss treatment options it just like you don’t have a clear mind. You’re not even listening, probably.” Louganis is surprisingly still a bit youthful and innocent despite those periods he went through being closeted, scared to tell anyone he was gay or HIV-positive; years he struggled with alcohol, abusive boyfriends, and low self-esteem. He wants to make sure his inﬂuence—speaking his truth and being open to the world—means eventually other young people won’t go through what he did. “Secrets can be very isolating,” Louganis admits. “And I have learned, by being as authentic as I can be and sharing my journey, it not only has been freeing, but it has had a positive impact for [other] people who can just be themselves—to live a life that’s open to possibilities.” HIVPLUSMAG.COM

TREATMENT / TASP

GOT THE RUNS? THERE’S A NEW DRUG FOR THAT!

The most uncomfortable side effect of HIV finally has a solution.

MARCH / APRIL 2017

SHUTTERSTOCK

here are 18 million people with HIV currently on antiretroviral therapies, and according to a study presented at ID Week, one in five experience diarrhea. Most self-medicate with over-the-counter remedies or dietary restrictions, rather than having that uncomfortable conversation with their doctor. As a result, diarrhea is seriously underreported, despite the fact that 66 percent of healthcare providers say it’s the most troublesome adverse effect of antiretroviral therapy. Furthermore, doctors think only 19 percent of their HIV-positive patients are experiencing diarrhea and seven percent are taking antidiarrheal medication. But the truth is that 21 percent of HIV-positive people report having diarrhea and 10 percent say they take antidiarrheals. Over-the-counter medications have two problems: They can have interactions with antiretroviral drugs and their use often leads to constipation. Now a drug designed to specifically relieve diarrhea in HIV-positive people on antiretroviral medications—without those typical side effects—has received FDA approval. Napo Pharmaceuticals released Mytesi in tandem with two patient assistant programs, aimed at helping both doctors and those living with HIV realize a better option exists. “Diarrhea can be embarrassing, and it is not a topic that people usually bring up on their own,” Napo Pharmaceuticals CEO and founder Lisa Conte says. “We want to educate patients and their healthcare providers to let them know this product is available and hope to spark a conversation among those that are suffering from diarrhea.” HIV specialist Dr. Roger D. MacArthur recommends that doctors be more forthright with their HIV-positive patients, and check in at least every six months. “Doctors should change their question from ‘have there been any changes in your bowel habits?’ to ‘are there any issues you are having with diarrhea or loose stools that you want to discuss?’” — DAV I D A R TAV I A

SORRY BABY BOOMERS: MORE OF YOU ARE GETTING STIS

IS PREP SAFE FOR SENIORS?

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FOR OLDER PEOPLE, THE HIV PREVENTION TREATMENT DOES REQUIRE MORE MONITORING. The rules of sex do not change when you get older—awkward sex and surprise cases of chlamydia suck at any age. But how we prevent HIV transmission is certainly evolving. PrEP use is seeing an uptick among people older than 50 and here’s why: an estimated 42 percent of Americans living with diagnosed HIV are aged 50 and older, reports the Centers for Disease Control and Prevention. According to HIV.gov, people over 50 are also less likely to be tested for HIV than younger adults. In addition, less than 10 percent of people over 50 wear a condom during sex, even though the CDC estimates that 17 percent of new HIV infections occur in people 50 and over. People living with HIV over 50 may have partners who can’t use a condom because it’s harder to sustain an erection. Because most women tend to associate condom usage with unwanted pregnancies, once they hit menopause (where pregnancy is no longer a threat), they may not insist on using condoms, either “Age is just a number and HIV and STIs do not discriminate based on age, sexual orientation, gender identity, and a host of other factors,” says Kelsey Louie, the CEO of GMHC. “For that very reason, menopause doesn’t change the need to practice safe sex.” While our immune systems become less robust with age, PrEP is still an important tool to prevent HIV transmission if your partner is HIVnegative. Navigating PrEP in addition to comorbidities like high blood pressure, diabetes, and osteoporosis, should be handled strategically with your healthcare provider to prevent any possible interactions with other meds. A recent report showed that adverse kidney changes due to using Truvada—the only medication currently approved as PrEP— are rarely serious and usually reverse after stopping the medication. But, because Truvada can cause bone and kidney problems in some cases, consistent monitoring is necessary. The physical changes of aging increase everyone’s susceptibility to STIs. For cisgender women and transgender men who haven’t had bottom surgery, the vaginal wall gets thinner due to loss of estrogen. This can increase risks of HIV transmission, but that’s information rarely shared by healthcare providers. Regardless of age, those in serodiscordant relationships (where one partner is HIV-positive and the other is negative) should always consider PrEP; unless the poz partner is undetectable—in which case they can no longer transmit HIV. — DA

A new British report shows sexually transmitted infections among people 50 to 70 have risen nearly a third in the last few years. Previous studies have shown similar trends among Americans. Psychology Today reported in 2014, “Since 2007, incidence of syphilis among seniors is up by 52 percent, with chlamydia up 32 percent.” The new report speculates that the rising STI rates are connected to increasing divorce rates, fear of stigma preventing treatment, and decrease in condom usage as the risk of pregnancy drops. In 2010, sexual health clinics in the U.K. recorded 11,366 new infections among people between 50 and 70. That number rose to 15,726 in 2014. According to a seperate U.K. factsheet, in 2015, there were 28,113 new STI diagnoses in people between 45 and 65. The latest report also discovered that HIV cases accounted for 16 percent of all new STIs last year. Additionally, two-thirds of people between 50 and 70 reported at least one sexual partner in the past year, despite society’s misconception that sexual appetites diminish past a certain age. A 2012 version of the annual report found nearly half of those between 50 and 70 reported having intercourse at least twice a month, with 48 percent of men and 17 percent of women admitting to masturbating twice a month or more. Dr. David Lee, who wrote the report’s chapter on sexual health, says increasing rates of STIs have more to do with a sexually liberated attitude Boomers have become accustomed to. “Thinking about the Baby Boomer generation, growing up in the 60s, one would argue perhaps they were exposed to more liberal attitudes to sexuality,” he told The Independent. Boomers aren’t the only ones facing increased risks of STIs. For example, syphilis has reached catastrophic rates among gay and bisexual men. The question now is how do we combat these rising rates of STIs, especially given the number of people having condomless sex? — DA HIVPLUSMAG.COM

TREATMENT / TASP

DOUBLE NO TROUBLE

SWITCHING TO TWO-DRUG REGIMEN, USERS STAYED UNDETECTABLE.

positive participants from three or four drugs to two—have had positive results. Researchers switched poz participants who had suppressed viral loads to a two-drug regimen of dolutegravir and rilpivirine, and—after 48 weeks—they all showed continuous viral suppression. Keep in mind, however, that the use of dolutegravir and rilpivirine as HIV maintenance treatment has not yet been approved. There also remain questions about the impact using two drugs instead of three or four might have on the development of drug resistance. “These are important results for the HIV scientific community, and represent an important milestone

in our understanding of how HIV can be treated,” ViiV Healthcare CEO Dominique Limet said in a statement. “The results support our strategy of investigating two-drug regimens as innovative treatment options for people living with HIV and we are planning regulatory submissions for this two-drug regimen as a single tablet in 2017.” The study was made possible through a collaboration between ViiV Healthcare and Janssen Sciences Ireland UC, one of the Janssen Pharmaceutical Companies of Johnson & Johnson. Their partnership was created to investigate the potential of combining dolutegravir and rilpivirine in a single tablet.— DA

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or those living with HIV, it’s become routine to have a three-drug antiretroviral regimen: with an integrate inhibitor, a nonnucleoside reverse transcriptase inhibitor, and a boosted protease inhibitor. But, studies are showing that simplifying it to a two-drug combination may be just as effective when treating people with suppressed viral loads. The latest study to support this comes from Viiv Healthcare (the HIV-focused company owned by GlaxoSmithKline with Pfizer Inc. and Shionogi Limited as shareholders), which just announced that both of its Phase III studies—to evaluate the safety and efficacy of switching HIV-

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HEALTHY, BUT AGING FASTER? POZ PEOPLE MAY HAVE HIGHER RISKS FOR CO-EXISTING DISEASES AS THEY AGE.

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R E S E A R C H P R E S E N T E D AT

IDWeek 2016 showed an increase in the number of HIV-positive people experiencing comorbidities—such as cardiovascular disease, kidney malfunction, and bone loss—as they age. Over 40 percent of those diagnosed with HIV in the U.S. are over 50, according to the Centers for Disease Control and Prevention, and that number is on the rise. While today’s antiretroviral therapies are enabling positive individuals to live longer and healthier lives, HIVpositive people remain at higher risk for developing additional chronic conditions such as heart disease and cancer, reports NAM’s AIDSMap. In fact, some

of these conditions are linked to specific antiretroviral drugs, like tenofovir (Viread) and abacavir (Ziagen). Many of those over 50 living with HIV are longterm survivors, who have increased risks due to the length of time they’ve been positive and on medications. In the recent study, researchers used Truven Health MarketScan Databases—which has data on nearly 230 million patients going back to 1995—and pulled the medical information for 21,180 HIV-positive people (diagnosed and treated with antiretroviral medications from 2003 to 2013) and 66,027 HIV-negative people. Analyzing comorbidity rates, they found HIV-positive people were more likely to have most diseases compared to their HIV-negative counterparts; although the extent of that higher risk varied by condition. For those who had commercial health insurance, seven percent of HIVpositive people had cardiovascular disease versus 4 percent of HIV-negative people; 9 percent of poz people had kidney disease vs. 3 percent of HIVnegative people. For osteoporosis and fractures, it was 8 percent vs. 6; hypertension, 31 vs. 30 percent; hyperlipidaemia, 31 percent vs 30; and endocrine disease, 21 percent vs. 18. Additionally, HIV-positive people were more likely to have hep C (5 vs. 1 percent).

Researchers then compared those who had Medicaid instead of commercial insurance, and found poz people with the government assistance had even higher risks. For cardiovascular disease, it was 11 percent for HIV-positive people vs. 8 percent HIV-negative people; kidney disease, 15 percent vs. 6 ; osteoporosis and fractures, 13 vs. 10 percent; hypertension, 37 percent vs. 34; hyperlipidaemia 22 vs. 24 percent; endocrine disease 26 percent vs. 25; and hep C, 23 percent vs. 4 percent. Approximately 25 percent of people with HIV also have hep C, which disproportionately impacts AfricanAmericans. The federal government recently launched a new initiative aimed specifically at people of color living with both HIV and hep C. Researchers also showed that rates of cardiovascular disease, kidney impairment, and fractures have risen significantly in both HIV-positive and HIV-negative people between 2003 and 2013. “HIV patients have multiple nonAIDS-related comorbidities, including risk factors for renal impairment, cardiovascular disease, and fracture/osteoporosis,” the researchers concluded. “Among treated HIV patients, the prevalence of comorbidities is increasing over time, especially renal, bone, and cardiovascular comorbidities.” — DA HIVPLUSMAG.COM

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.

•

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.

•

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

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BY GARY MCCLAIN

5 TIPS FOR FINDING TRUE LOVE WHEN YOU HAVE HIV FIRST, STOP LABELING YOURSELF. YOU ARE NOT YOUR DIAGNOSIS. HIVPLUSMAG.COM

D A I LY D O S E BY GARY MCCLAIN

(CO N TIN UE D F R O M PAGE 43)

T H E R OA D C A N feel pretty lonely when

you don’t have that one special person walking beside you. Probably every week a client tells me how much they want to be in love. How sad they feel about being alone, and how hard it is to meet someone to have a life with. Let’s face it. Whether you’re young and just starting to look for a life partner, or you’re decades older with the attendant life experiences, it’s not easy to find the right person. Living with HIV can add an extra wrinkle to the process of connecting with people who might have dating potential. You have to disclose your diagnosis to someone who may or may not be very understanding. And if they are HIV-negative and not very well educated, that can leave you feeling like having HIV is a pretty lonely road. The simple truth is that your HIV diagnosis affects the people in your life. It’s not something that you, or your potential partners, can pretend doesn’t need to be acknowledged and discussed, and not everybody you meet is going to be willing to step up to the plate. As a result, it’s only human to feel a little hesitant to take the risk of meeting new people. And if you’ve had a few disappointments along the way, you might also be wondering if having a partner is even in your future. In my experience, when you are living with HIV, getting connected with the right person is an inside job. By that, I mean it starts with working on your own attitude toward dating and having a relationship. And the work you do on yourself is a whole lot more important than the dating tips you might be reading about, or your well-meaning friends may be passing on to you. To have a healthy relationship, I think it’s important to be comfortable with yourself, and confident in your ability to meet your own needs. To be able to face the future on your own, and to not only be okay with that, but to feel like you have a quality life—even if that means being single. After all, we all have to be able to make ourselves happy first. Nobody else can do that for us. Here are some ways you can:

B U I L D A ST R O N G F R I E N DS H I P N E T WO R K .

We need people in our life who care about us, and whom we care about, to be with during the good times and the hard times. Friendships help you to maintain a solid foundation. And 44

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when your foundation is solid, you are in a better position to be open to a relationship, because it will enhance your life rather than out of neediness or desperation to have someone to make you feel complete. After all, you’re already complete. B U I L D YO U R S E L F U P.

If you are caught up in reminding yourself how unlovable you are, then your dating life will be all about proving to yourself that you’re right. Stop labeling yourself. Especially with labels you don’t want, or need, to live up to. Sure, living with HIV presents some challenges. But you are the same lovable and caring person you have always been. Keep in mind: you are not your diagnosis. TA K E YO U R E Y E O F F T H E B A L L .

By focusing too hard on something, we can end up getting in our own way, and send other people running for the hills. Instead of making finding a partner your mission in life, make it your mission to have a quality life, right now and not sometime in the future. J U ST B E YO U R B E ST YO U.

Think of it this way: you are what you’ve got going for you. Your interests, your talents, your unique personality, your compassion for others. Let your light shine! When you’re happy with your life, and living it on your own terms, you are going to be that much more attractive to others. Who isn’t attracted to confidence? MAKE IT FUN.

Finding a partner is a numbers game. You just have to keep putting yourself out there in the world. So make it about getting to know someone new, to share a smile and few friendly words, and make the day a little more enjoyable. If you’re able to accomplish that much, then that’s a lot. Take the pressure off yourself. And let go of the expectations for other people. Be happy with yourself. You’ll be that much more able to make someone else happy.

Plus’s mental health editor Gary McClain, Ph.D., is a counselor in New York City with a specialty in coping with HIV and other chronic health conditions. His books include The Complete Idiot’s Guide to Breaking Bad Habits and Empowering Your Life With Joy.

aging with hiv

(CO N T I N U E D F R O M PAG E 2 5 )

stigma and lack of m e d i c at i o n a d h e r e n c e l e d t h i s fo r m e r i n J e ct i o n d r u g u s e r to a n a i d s d i a g n o s i s . n o w , s h e ’ s u n d e t e cta b l e .

DENA MICHELLE, 50-ISH LO S A N G E L E S

L I V I N G W I T H H I V FO R N I N E Y E A R S AS THE OWNER of her own eponymous music management company in L.A., Dena Michelle knows what it’s like to be in control. But when she found out she was diagnosed with HIV in 2008, everything changed. “I was diagnosed on April Fools Day,” she says, noting the irony. “I was an IV drug user and shared needles with someone who was HIV-positive. My immune system was [already] crazy. When I was told the health department needed me to test, I didn’t want to wait two weeks for my results so I went to BART.” Becoming a Responsible Teen (BART) is a Centers for Disease Control and Prevention risk reduction program for African-American teenagers. Michelle was neither of those things, but they didn’t turn her away. Initially, she wasn’t that worried. “Never in a million years did I expect that I would be told I was HIV-positive,” she recalls now. But, as she was waiting for her rapid test results, she started to worry. In 2015, there were 39,513 diagnoses of HIV in the United States due to injection drug use, according to the CDC. Of that number, 41 percent were among women. If the current rates continue, one in 23 women who inject drugs will be diagnosed with HIV in their

lifetime. Those were the kind of statistics that started streaming through Michelle’s brain. “As I sat there waiting, my entire life flashed in front of me,” she remembers. “When the man came out, I knew by the look on his face it was all bad [news].” After that, she had some tough years. “I have cried buckets due to uneducated ugly people,” Michelle says about the HIV stigma that seems to pervade social media— and much of the music industry. And, she admits, she wasn’t compliant with her meds at first because of that shame and social stigma. In response, her T cells dropped to 42 and her viral load spiked to over half a million. Doctors told her that her HIV had escalated to stage three. Michelle was able to come back from that AIDS diagnosis, and adds, “I am now undetectable and my T cells are staying at 142. [HIV] is not a death sentence. If you take your meds you will be OK. I know now that HIV was my path.” That path led to her to a new place of happiness. “I am engaged to my soul mate,” she says. “My fiancé is a very well-known musician and has truly been my rock, my best friend.” That’s more proof that HIV doesn’t stop you from finding love, even with a rock star who gets adulation as part of the Los Angelesbased band, Slash’s Snake Pit.

Find out more about Dena Michelle Management at bit.ly/DenaMichelle

HIVPLUSMAG.COM

R E S I S TA N C E

I AM A WARRIOR STEVE BARATTA IS RESISTANT TO 90 PERCENT OF ANTIRETROVIRALS, BUT THAT’S NEVER STOPPED HIM.

was born and raised in Poughkeepsie, New York, and I’m 56 years old. I tested positive in 1990, while living in Albany, and was diagnosed with AIDS one year later. My AIDS diagnosis came after I got esophageal thrush, which is basically a severe, systemic yeast infection that can spread throughout the entire body. It took over two years of heavyduty antifungals and a complete dietary makeover to finally rid myself of it, without any re-occurrences.

Living With AIDS

My T cell count at the time of my HIV diagnosis was about 220 to 250, where it remains 26 years later. I am a long-term survivor of AIDS—I have been living with it for 25 years—and HIV. Based upon guidelines from 46

MARCH / APRIL 2017

the Centers for Disease Control and Prevention, I probably became HIVpositive 10 to 12 years before my first positive test, which would mean I’ve really been living with HIV for 38 years. My CD4 to CD8 ratio, which is considered a more accurate barometer of how well the immune system is functioning, has held steady at between 10 to 14 percent. My T4 cell count has dipped below 100 numerous times throughout the years.

Building Resistance

I only did AZT for a short period, because I realized—after extensive research—that they were dosing it too high, and subsequently killing people. I began single-drug therapy—one of the early protease inhibitors—the first year it became available. I had access to it from participation in a clinical trial, one of many I have fought hard to get into over the years. But as a result of previous drug therapy, and drug cross-resistance, my resistance profile is extensive. I am now fully or partially resistant to at least 90 percent of all antiretroviral medications currently available. In the mid-1990s, I came down with a severe case of hepatitis A, for which I was hospitalized [for] over two weeks. During that period, I was informed by my HIV doctor that

if my liver enzymes did not come down, I would die, thanks to my weakened immune system. I didn’t. Then around 2008 or 2009, I was diagnosed with hepatitis C. At that time, doctors assumed that giving hep C treatment to people who were HIV-positive, with 200 or fewer T4 cells would fail. My T4 cells hovered around 200 at the time, so my gastrointestinal doctors could not decide if, or when, therapy should be started. When I moved into the beginning stages of liver failure, my HIV doctor hospitalized me. Her nothing-lessthan-heroic measures saved my life. She stopped all the HIV meds and— because my GI doctors kept waffling—we decided that I would be my HIV doctor’s first hep C patient. Once again, she saved my life. I responded to the hep C treatment within the first month and achieved full remission within six months. After a grueling, horrible year of interferon shots and ribivarin, I am now cured of hep C. After I finished that treatment, I was able to go on a four-drug HIV regimen. I am what they call a person who responds virologically, but has no response immunologically, which means I now have an undetectable viral load, but my immune system has never recovered. My T4 cells have never been higher than 250.

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B Y S T E V E B A R AT TA

My Fight Back

Even with this treatment resistance, the need to constantly switch medications, and the battle to keep my immune system healthy, I’ve always stayed busy. I joined the protest group, ACT UP, in the mid-1990s, and participated in many direct action demonstrations locally and nationally. I was a co-founder of one of the first organizations outside of New York City for people living with AIDS, in Albany. I served for many years as a member of the community constituency group overseeing all HIV and AIDS research for the federal government. My last year as part of the group, I was elected to serve on the executive committee, the only non-medical person [to do so]. This committee had final say on which HIV and AIDS trials would start anew or continue. Those two years were invaluable in terms of my educating myself about this disease. I served for years as a member of the HIV and AIDS advisory board for Albany Medical Center, where I was eventually appointed to the hospital’s own advisory board. I was one of the first members of the New York State HIV Prevention Planning Group, setting up all of the local Ryan White HIV/AIDS Program networks throughout the state. I have served in many different roles as an HIV housing advocate nationwide.

I Couldn’t Be Prouder

One of the things of which I am proudest is helping the associate dean of Albany Medical College start their own HIV/AIDS regional education program in schools. I continued to participate as an educator and speaker for at least 10 years. *As told to Savas Abadsidis ST E V E B A R AT TA

WHY IS YOUR RESISTANCE TO HIV DRUGS RISING? NEW STUDY SHOWS PEOPLE CAN HAVE A STRAIN OF HIV RESISTANT TO BOTH MODERN AND PREVIOUS GENERATION MEDICATIONS. A high number of people with HIV are showing resistance to both newer and older drugs, a surprising turn according to findings published in The Lancet Infectious Diseases. Drug reistance occurs when a disease develops a way to respond to medicine being used to treat it. According to a 2012 Centers for Disease Control and Prevention report, two out of every 10 new cases of HIV involve strains with at least partial resistance to one or more antiretroviral medication. Those with a strain of HIV resistant to three classes of drugs are rarer, representing less than one percent of new HIV diagnoses. This particular study involved 712 people with HIV strains that aren’t being controlled by drugs used to treat the disease today. The surprising result was that 16 percent of the participants turned out to be resistant to older drugs called thymidine analogues, which the participants had never taken. It was previously known that multi-drug resistance can occur, and that people could be resistant to a whole class of drugs even if they’d only been exposed to one medication in that class. In addition, multi-drug resistant strains of HIV can be transmitted, which may help explain why some participants in this study had a strain resistant to both modern and older drugs, even though they’d never taken those earlier therapies. Lead author and professor of infection and immunity at University College London, Ravi Gupta says to prevent these multi-drug resistant strains from spreading further, the global HIV community needs more HIV monitoring. “We need cheap, reliable systems to assess people before treatment,” Gupta explained in a University College London news release. “Ideally, we need sim-

ple resistance testing kits to help screen for drug resistance before giving treatment. This would also help us to monitor HIV drug resistance globally more effectively.” Those tests are standard practice in the U.S., because they help determine the kind of treatment someone with HIV should be prescribed. Lab testing can be expensive and time consuming which may prohibit their use on a global scale. Gupta argues there’s another way, saying, “until such kits are widely available, we could test the amount of virus in the bloodstream before and after giving treatment. Although not as precise as resistance testing, this could help us to detect treatment failure earlier and switch patients to second line drugs.” While new medications like the long-acting injectable ibalizumab offer promise in fighting multi-drug resistant HIV, those are typically second-line treatments given to people who’ve become resistant to first-line drugs. Other alternatives are seldom available to those living in rural areas, which is why Gupta says it’s important to focus on preserving the effectiveness of first-line treatments. “We were very surprised to see that so many people were resistant to both drugs, as we didn’t think this was possible,” explained Gupta. “Mutations for thymidine analogue resistance were previously thought to be incompatible with mutations for tenofovir resistance, but we now see that HIV can be resistant to both at once. This emphasises the need to check the genetic profile of a patient’s virus before prescribing first-line treatments, as they may have already developed resistance to other treatments that they did not mention having taken.” — DAV I D A R TAV I A

HIVPLUSMAG.COM

B AC K TA L K B Y D AV I D A R TAV I A

You nearly died from AIDS complications. What were those years like?

I was diagnosed with HIV in 1990. And in 1997, right after my mom passed away, was my first AIDS diagnosis. I was in the hospital about 13 times over the next 15 years, dying from something AIDS-related. I had West Nile … I had viral meningitis. Every six months it felt like I wasn’t coming back. In an acting class in January 2011, with [my friend] Dee Wallace ... she scolded me in a scene. I started crying and said, “I just want to be a great actor.” And, all of a sudden, I had an “Aha!” moment. I keep saying, I want to be healed, but I need to claim that I am healed. In that moment, I had this switch in my brain. Every day I’d say, “I’m healing from AIDS.” Then one day I got tested and my doctor said, “You don’t have AIDS anymore,” so I was like, what?!

You think mental healing affected the way your body reacted? Absolutely. It was a profound extraordinary effect. It was like Louis Hayes said, “You change your story, you change your life.” [It was] time to tell a different story. That moment in acting class, it was so pivotal. I got it. From that moment on I never said I had AIDS again—just plain old HIV now.

So, having HIV became an upgrade. There’s comedy in that. Yes! And that’s how I started healing myself…. When I found out I was positive I started doing a lot of comedy. I would do stand-up in Boston, so I could heal myself and make myself feel better. And it did. My T cells went from 300 to 700 to 900 to 1,200.

Did you make other lifestyle changes? Yes. I haven’t drank or done drugs since I was a teenager, so I was already sober. [But, my friends] loved to party at the time. They kept partying, saying, “Well I’m going to be dead anyway.” Sadly, they’re all gone, except for two, and it makes me sad they didn’t hang out long enough to see the wonderful medicine we have now.

Many long-term survivors can relate to that. Social stigma bled into how we perceived ourselves. We thought we were disposable. Like lepers. I’ve had a great life, in spite of my status. I’ve worked with celebrities. I was in Grandfathered with John Stamos. My famous line was, “The tiramisu was to die for.” Being HIV-positive was a huge blessing in disguise.

MAGIC MIKE THIS ACTOR TURNED ACTIVIST BOUNCED BACK FROM AIDS THANKS TO COMEDY.

M I K E H E N N E SSY i s an actor, comedian, and activist who earned the nickname “Miracle Mike” after rebounding from only four T cells. He’s involved with Life Group LA, Thrive Tribe Foundation, and his own Positive Actors in Action (a group of actors living with HIV working to make Hollywood more inclusive).

MARCH / APRIL 2017

Because it forces you to look at your mortality, in a way that inspires you to understand your value in the world? Exactly!

What’s it like being HIV-positive in Hollywood? You know, as an actor it’s been pretty empowering. I stood up at a [Screen Actors Guild-American Federation of Television and Radio Artists] meeting about five years ago and said, “We need to have more HIV and AIDS presence in movies and in TV. I feel like there are people who play the roles but they’re not actually HIV-positive. I actually have HIV. I want those roles offered to me first!” Recently, SAG-AFTRA asked me if I would address the actors who do have HIV and are terrified to talk about it. And we [Positive Actors in Action] were contacted by Hollywood Reporter. They wanted to know about this group of HIV actors who are putting themselves out there. We’re doing a lot for the stigma, and when people hear my story they’re even more encouraged because here’s someone with HIV, with only four T cells, out here trying to make a difference in the world.

Is this youngest generation a little jaded as far as prevention goes? In some areas of the country they definitely are jaded because they didn’t see what we saw. They didn’t have 20 of their friends die. I’ve encountered a lot of young men who are extraordinary. Some of the kids think, oh we have PrEP now, it doesn’t matter. But it does matter. You can still get sick and you can still die. I want them to take it seriously. Listen to the elders. Listen to the ones who’ve been there.

TREATMENT LOWERS THE AMOUNT OF HIV IN YOUR BODY. AND HELPS LOWER THE CHANCE OF PASSING HIV ON.

There is no cure for HIV, but treatment can help protect your health and the people you care about. Talk to a healthcare provider and visit HelpStopTheVirus.com Â© 2016 Gilead Sciences, Inc. All rights reserved. UNBC3046 04/16

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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