THE 16 MOST AMAZING HIV+ PEOPLE OF 2016
BECAUSE YOU’RE MORE THAN YOUR STATUS
KEVIN SESSUMS From Vanity Fair to a Journey of Healing
SEPTEMBER/OCTOBER 2016 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.
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. Tell your healthcare provider if you have any side effects that bother you or do not go away.
What should I tell my healthcare provider before taking 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
BECAUSE YOU’RE MORE THAN YOUR STATUS
Most Amazing HIV+ People of 2016 Chandi Moore, Kevin Sessums, Kahlib Barton, Sharmus Outlaw, Enrique Menendez, Tez Anderson, Teo Drake, Carrie Foote & Many More
SEPTEMBER/OCTOBER 2016 www.hivplusmag.com
ON THE COVER 22 Kevin Sessums
Number 2 on our Amazing list.
THIS PAGE 23 Kahlib Barton
Number 3 on our Amazing list, is surrounded by his friends on the Young Black Gay Men’s Leadership Initiative (YBGLI.org), a national movement of young black men addressing issues disproportionately affecting their peers, especially HIV.
4 | SEP TEMBER/OCTOBER 2016
16 MOST AMAZING HIV+ PEOPLE OF 2016 19-43 Sharmus Outlaw, Kevin Sessums, Kahlib Barton,
Enrique Menendez, Tez Anderson, Dr. Carrie Foote, Louis "Kengi" Carr, Chandi Moore, Jeffrey L. Newman, Kerry Thomas, Teo Drake, Kari Hartel, Todd Heywood, Khafre Abif, Rev. Andrena Ingram, and Dena Gray
THE BEST OF THE REST
Here are the rest of this year's 75 Most Amazing HIV-Positive People from around the country.
SEPTEMBER | OCTOBER 2016 TRAGEDY IN ORLANDO 8 How to Heal Gary McClain offers some advice on moving forward through grief.
BUZZWORTHY 10 Pure Gratitude
Grateful Dead tribute raises money for HIV charities.
11 11
Our Poz Politico
Sean Strub is in da house!
$25 Million
That's what amfAR raised.
12 Hot Guys in Underwear Pos Pedelers pose away.
13 Meningitis Scare
L.A. is gripped by illness.
14 Bad Month for Condoms Russia blames them, gay men don't use them, and straights think anal without 'em protects from HIV.
15 Allies in Pictures
Beckham, Lovato & more.
TREATMENT CHRONICLES 44 Chemistry Lessons Atripla users get good news.
45 Kicking Hep C
The new drug Epclusa treats all HCV genotpyes, an RX first.
45 Helping Hand
A new HIV vaccine is in the works.
DAILY DOSE 46 Our Golden Years
New advice on aging with HIV.
POSITIVE THOUGHTS
YANNICK DELVA
In this special insert, Rick Guasco talks about his journey back to HIV treatment.
COVER: Kevin Sessums photographed by Cameron Lee at CameronLeeArt.com. BONUS COVER, PG. 3: Enrique Menendez photographed by Frank Yamrus; hair by Steven Dillon; and styling by Diego Diaz. Sharmus Outlaw by PJ Starr.
HIVPLUSMAG.COM
|5
HEY, WANNA MEET THE PLUS TEAM?
editor in chief DIANE ANDERSON-MINSHALL SVP, group publisher JOE VALENTINO art director RAINE BASCOS senior editor JACOB ANDERSON-MINSHALL managing editor SAVAS ABADSIDIS editors at large TYLER CURRY, KATIE PEOPLES associate editor ELAINE MENDUS contributing editors MARK S. KING mental health editor GARY MCCLAIN creative director, digital media & integrated marketing DAVE JOHNSON interactive art director CHRISTOPHER HARRITY online photo and graphics producers YANNICK DELVA, MICHAEL LUONG manager, application development ALEX LIM program manager VINCENT CARTE front end developer MAYRA URRUTIA traffic manager KEVIN BISSADA director, integrated marketing JOHN MCCOURT senior manager, multiplatform advertising solutions PAIGE POPDAN manager, integrated marketing JAMIE TREDWELL art director, integrated marketing PETER OLSON coordinator, integrated marketing RYAN WEAVER coordinator, integrated ad sales/marketing, CASEY NOBLE senior director, media strategy STEWART NACHT manager, ad operations TIFFANY KESDEN vp, marketing ROBERT HEBERT director of social media LEVI CHAMBERS associate social media editor DANIEL REYNOLDS fulfillment manager ARGUS GALINDO operations director KIRK PACHECO los angeles office manager HEIDI MEDINA production services GVM MEDIA SOLUTIONS, LLC
HERE MEDIA chairman STEPHEN P. JARCHOW ceo PAUL COLICHMAN cfo/coo TONY SHYNGLE executive vice presidents BERNARD ROOK, JOE LANDRY svp, editorial director LUCAS GRINDLEY senior vice presidents GREG BROSSIA, CHRISTIN DENNIS, LUCAS GRINDLEY, JOHN MONGIARDO, JOE VALENTINO vice presidents ERIC BUI, STEVEN CAPONE, ROBERT HEBERT 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 © 2016 by Here Publishing Inc. All rights reserved. Printed in the USA. FOLLOW US ON FACEBOOK AND TWITTER
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The best part of my day is virtual coffee (i.e. Slack) with my team: that’s because we’re located all over the country (New York, California, Texas) and we’re always on the move between conferences and events, speaking engagements and trainings. Most recently, we teamed up with the NLGJA, the LGBT journalist’s association, to train reporters on how best to talk about and to people living with HIV (notice how many people get it wrong still?). We want media outlets to remove stigma, uncover the real stories, and inject modern science in their coverage of people with HIV.
We also were lucky enough to garner two funding partners this year: The Equal Voices Fellowship (from the Marguerite Casey Foundation) gave our senior editor JACO B A N D E R S O N - M I N S H A L L (yep, that’s my co-pilot in work and life, above with me, Katie Peoples, and Laverne Cox) funding to report on intersectional issues facing black gay and bi men including institutional racism, depression, poverty, HIV, and incarceration, while the USC Annenberg Health Journalism program funded Jacob’s research into San Francisco’s impressive results in lowering HIV transmissions and AIDS-related deaths, while raising the use of PrEP. His investigative report on whether other California cities could do the same comes out next issue so stay tuned. When he’s not at work on Plus, Jacob is also co-founder of Retrograde Communication, an editorial service firm whose clients include Here Media, Walgreens, and Greater Than AIDS. He’s also the author of several mystery novels and one memoir, Queerly Beloved: A Love Story Across Genders. Our new managing editor, SAVAS A B A DS I D I S , began his career as founding editor of A&F Quarterly, Abercrombie & Fitch’s signature, provocative magazine, and he was editor for its entire run. Following his success at Abercrombie he took Complex Media to new heights, as its executive editor, laying the groundwork for the media empire it has become. In addition to his role at Plus, Savas is a content creator and chief media strategist for Connected Health Solutions Inc., a progressive new-media public health company that produces social marketing campaigns for the LGBT community, at-risk and minority teens, and other vulnerable
EDITOR’S LETTER I ’ V E G OT TO admit, it’s hard
BRADFORD ROGNE
to write a chipper editor’s note when I’m still reeling from the deadly massacre at a nightclub in Orlando, Florida, that killed nearly 50 people—the vast majority black or Latino, and LGBT or allied. The average age was 29, meaning there were a few geezers like me and a lot of very young adults. Based on current statistics about the percentage of Latino and black men living with HIV, it’s a good bet that there were at least 10 people killed who were HIV-positive, though that certainly hasn’t come out in the media reports. This was the largest mass killing of LGBT people as well as the largest killing of Latino people (or as activists have begun say, Latinx). We couldn’t make this issue without first sending our thoughts out to those victims, survivors, families, and communities touched by yet more senseless violence and hate, but as a health magazine we offer up ways to cope. Doctors Aletha Maybank and Demetre Daskalakis talk on pg. 48 about why hate is a public health threat (from Donald Trump rhetoric to Orlando shooter Omar Mateen’s homophobia). On pg. 8, Dr. Gary McClain, our mental health editor, offers up sound advice on how to heel from the trauma of Orlando. But hey, listen, this isn’t a bummer issue. This is a fired up one. This magazine, and especially this issue, celebrates the survivors amongst us. We are the winners; not the haters. Our annual look at the Most Amazing HIV-positive People in the U.S. is chock full of survivors. Rev. Andrena Ingram was literally recovering from heart surgery (that’s her in a tiara in her hospital bed!), while trans rights activist Sharmus Outlaw was in hospice unable to choke out even the simplest of sentence. Long denied proper healthcare, Outlaw died just days before we went to press, her million-watt smile (shown here) a reminder of how much she persevered through such pain. Several of the folks in this year’s list survived AIDS; the early days of the epidemic, the physical toll of the virus and disabilities that came with it, the grief of losing spouses or lovers, parents or children. Some, like Tez Andersen, came away with PTSD, but soldiered on. Others, like Chandi Moore, saw violence in the streets; others, like Todd Heywood, in their own homes. In fact, Heywood, who lived through a savage attack by two men he met online, got to witness them sentenced to 17 to 55 years just before we went to press. Like I said, this is a magazine of survivors and this issue, which features people who are gay, straight, bisexual, transgender, cisgender, African-American, EuropeanAmerican, Native American, Asian-American, Latino/a/x, immigrants (both documented and not), Christian, Muslim, Jewish, Hindu, young, old, middle age, and so very much more from around the country is among our proudest. And yes, we know, 75 people is far too few to celebrate the wonderful accomplishments and diversity of the poz community. Who knows, if Bob Poe or Thomas Simmons win their bids for Congress, we may have an HIV-positive congressman come January. Happy reading!
DIANE ANDERSON-MINSHALL EDITOR IN CHIEF EDITOR@HIVPLUSMAG.COM
populations to help them live better lives. CHS specializes in addressing systems that inform marginalization, HIV incidence, trans discrimination, HIV med-adherence, cyberbullying, and many more social and public health issues. He’s also a writer, editor, and PSA producer whose writing has appeared in publications including The Huffington Post, Maxim, Interview, The Advocate, and Fangoria.
Former managing editor, T Y L E R C U R RY , is now an editor at large. Tyler’s also an HIV educator for Walgreens and the author of the LGBTthemed children’s book A Peacock Among Pigeons. Former contributing editor KAT I E P E O P L E S , is a San Diego-based writer and editor. The former editor of Curve, Katie’s a copywriter for an ad agency specializing in public health awareness campaigns but maintains her journalism cred as our new editor at large.
Meanwhile, it’s promotion time for our new associate editor E L A I N E R I TA M E N D U S , a young editor and writer living in New York City. She graduated from Indiana University of Pennsylvania in 2014 and joined our team earlier this year hoping to explore the intersections between minority populations and HIV co-morbidities. (She is also a passionate dinosaur nerd, so there’s that.)
HIVPLUSMAG.COM
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WE CAN’T HELP BEING SHELL SHOCKED AFTER THE MASSACRE IN FLORIDA. HERE'S HOW TO MOVE FORWARD. BY G A RY M CC L A I N
W H E R E W E R E YO U on Sunday morning, June 12? What were you doing? Who were you with? I’ll go first. I was doing what I always do on Sunday morning. I was lounging on my couch, reading the newspaper, slugging back coffee. Unplugged. Later in the morning, I decided to check my email. I noticed a news headline, something about a shooting. And then I read further. I can’t describe my first reaction, other than shock and disbelief. You might have felt the
8 | SEP TEMBER / OCTOBER 2016
same way. I stayed pretty much numb through the afternoon. I’m a therapist, but I nevertheless had to ask myself: How do you wrap your mind around something like this? Questions about what happened gave way to questions about who it happened to. And then the names of victims started emerging, followed by faces. At that point the tragedy became that much more real to me, and I was overcome with sadness, along with anger. Why? Early Saturday evening—just hours before the shooting—these individuals were finishing work, having dinner, picking out clothing, planning on where they would meet their friends. I looked at the pictures of those who had died, their beautiful, hopeful smiles bringing tears to my eyes. That so many were members of the Latino community further intensified the sense of injustice and confusion I felt and provided yet another reason to ask the question you may have also been asking: Why? Just 12 hours before, the crowd at the Pulse had been looking forward to a night enjoying each other’s company, celebrating their freedom to be themselves and their affection for each other. And then, in the early morning hours, their lives were over. I had similar thoughts on Monday— just 36 hours ago, and again on Tuesday—just 60 hours ago. I read the stories of their lives, their accomplishments, their dreams, and the devastated loved ones they left behind, in the U.S. and in other countries. One young woman was described as a striver, and my heart broke yet again. It seems that tragedies become milestones in our lives. On the anniversaries, we look back and remember what we were thinking, doing, feeling on that day. How we heard the news. Who we talked to first. A story to be told, and told again, the feelings experienced again. I suspect that, like me, June 12, 2016, will live in your memory forever. I also suspect that, like me, you will hold it in your memory. The next day, as more faces and names emerged, the loss became that
YANNICK DELVA
OUR TRAGEDY IN ORLANDO: HOW TO COPE AND HEAL
much more real. And that much more real to my clients. One after another, we talked about Orlando, and this unspeakable act of violence against the LGBT community. Like my clients, I spent the week walking around in an achy daze. My clients expressed their grief, anger, confusion. Here’s how one of clients described his reaction: “I am so angry I can’t stand myself. I feel violated. Why should the LGBT community be singled out when we have suffered so much? Sure, I’ve gotten lots of calls and lots of words of support and I appreciate that. But I also have to read the sanctimonious statements from politicians who talk about people being killed who were ‘just living their lives.’ No! I want to scream, ‘They were not people just living their lives. They were LGBT people, dammit! You can’t say that?’” And then he said, “Today it feels good to hate back. And at this moment, I don’t care if that’s good or bad. It just is!” As I sat with my clients during that week that followed this tragedy, I felt my clients’ sadness. I sure as hell felt their anger. I was no longer trying to hold my own tears back. I had given up on being the objective listener and decided to just be human along with them. Here is the word that so often emerged in my conversations with my clients: powerless. They described the horrifying images they held in their minds of the victims of this massacre were trapped in the nightclub and powerless to save themselves as their lives slipped away. These thoughts and images became a profound metaphor for the loss of power—and the abuse that can come out of nowhere—that so many LGBT people around the world grow up with, and continue to live with. In their families, their schools, their communities, their state, their country. Every day of their lives. When we experience loss, we grieve. As we grieve, we feel the anger, the sadness, the frustration, regret. And yes, the feeling of being powerless to stop an unspeakable tragedy from occurring. Our experience of grief may also give way to feelings of hate. How do you cope with a tragic loss like this? I think you cope by placing one foot before the other, and working through your own personal grief process. What I have to offer you may not be especially profound, but I have taken comfort in the basics of Grief 101, and so have my clients. I hope you too will find something helpful here: ● LET YOURSELF FEEL. Feelings are feel-
ings. So let yourself feel all of them, the good ones and the ones you aren’t so proud of, without judging yourself. Have a good cry—or
a few of them. If you’re walking around with a lump in your throat and tears in your eyes, give yourself permission to have a good cry. ● TALK IT OUT. Sit down with a friend and let them know how you
feel. Choose someone who is not going to judge you or tell you what you should be feeling. This might be a good time to reach out to a mental health professional.
● HANG OUT. Spend time with people you care about. Talk, share,
laugh. Tell them how much they mean to you. And hug it out.
● DO AN ACT OF KINDNESS. Say a few words of support to a
friend or family member in need. Smile as someone you wouldn’t normally acknowledge. Volunteer. Donate. The world around you needs a few more do-gooders right now. We are all in this together.
● DO AN ACT OF ADVOCACY. Use your anger energy to do some-
thing positive. Get involved in an LGBT cause. Write letters to politicians. Yell. Attend a rally. Vote. Push the envelope.
● FIND YOUR OWN GREATER MEANING. This is personal, based
on your spiritual beliefs and perspective on life. I’ll tell you mine: This tragedy has reminded me that life is random, and often not very fair. And it’s reminded me of the importance of embracing every moment, living my life to the fullest, being grateful, and making sure the people I love know how much I care about them. What about you?
There’s an old saying you might have heard before: Time heals all wounds. What does it mean to heal from the massacre of innocent people? If time is going to somehow make me feel better about this tragedy, then I don’t believe time heals all wounds any more than I believe in Santa Claus. And if the passing of time means forgetting, then count me out. Let me tell you something as a therapist. I don’t believe that time heals all wounds. I think that when you experience a great loss, that wound stays there forever. And I, for one, am not sitting back and waiting to feel less wounded at what happened to the members of the LGBT community and their friends and family members who were at the Pulse on June 12. I don’t want to ever forget that night and that pain. It’s a wound I will carry with pride. But here’s what I also think. Over time, we will all learn to walk with this wound that was carved into the collective heart of the LGBT community and into the collective heart of every person who values equality and freedom to love. We will hold it in our own hearts and our minds and our spirits. And by walking with this wound, we will have the opportunity to become more compassionate. Less judging. More kind. To fearlessly expose the tenderness that we so often keep hidden from each other. Stronger as a community. Stronger as individuals. Refusing to be broken. Yes, to be empowered by the memories that will never go away and should never go away. This is the healing that we achieve by allowing ourselves to feel, to grieve, and to hope. Let’s seize every opportunity to love, to give of ourselves, to care for and to appreciate and to protect the people in our lives. Let’s honor those whose own lives ended so tragically by living and loving fierce and ferocious! Moment by moment, every day. #lovetrumpshate Are you in?
Plus’ mental health editor, Gary McClain, MS, PhD, LMHC, is a therapist, patient advocate, and author in New York City, who specializes in working with HIV-positive individuals and those diagnosed with chronic and catastrophic medical conditions. Find him at JustGotDiagnosed.com. HIVPLUSMAG.COM
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BUZZWORTHY GRATEFUL DEAD TRIBUTE ALBUM COULD BREAK HIV FUNDRAISING RECORDS T H E N E W T R I B U T E album, Day of the Dead,
is a love letter to the Grateful Dead, curated by The National rockers Aaron and Bryce Dessner. A tribute to the eclectic and iconic band from the era of psychedelic music, the album took four years to collect and compile. A project of Red Hot, the international organization dedicated to fighting HIV through pop culture, Day of the Dead, is expected to break the organization’s previous fundraising records. Featuring over 60 artists from a variety of musical backgrounds (including Mumford & Sons, Wilco, Courtney Barnett, and The National), the set reinterprets the songs and sounds of the Dead for a whole new generation. Also included with the vinyl set of Day of the Dead is an essay to the listener from John Carlin, founder of Red Hot. The letter underscores the place of the Grateful Dead in the post-war American musical scene, and it also serves as a reminder of the significance of HIV on our society. “There remain roughly 35 million people infected with HIV in 2016,” Carlin writes. “Most in the Global South who still don’t have access to drugs that could allow them to live healthy lives and prevent the spread of the disease. The Grateful Dead and all of the artists on this album generously donated their music so that all net proceeds will help organizations around the world prevent the spread of HIV and fight related health and social issues.” Since 1989, Red Hot has brought together hundreds of artists for tribute albums, concerts, and related events; and they’ve raised more than 10 million dollars for HIV treatment and prevention. Day Of The Dead is the latest of 20 such projects by Red Hot, with previous compilations covering genres such as country, bossa nova, indie rock, and tributes to great artists like Duke Ellington and J.S. Bach. A sample of Day Of The Dead can be found on Spotify, or you can get the album on DayoftheDeadMusic.com or iTunes. — E L A I N E R I TA M E N D U S
10 | SEP TEMBER/OCTOBER 2016
amfAR Raises $25 Million at Star-Studded Cannes Event C E L E B R I T I E S , FAS H I O N D E S I G N E R S , A N D AU T E U R S —including Leonardo Di Caprio, Katy Perry, Uma
OPPOSITE PAGE: SHUTTERSTOCK; BOROUGH BY XXX XXX; VILLAGE PEOPLE BY AP/JOEL RYAN
Thurman, and The Village People (pictured)—were among those who attended The Foundation for AIDS Research’s 23rd Annual Cinema Against AIDS gala last May, at the Hôtel du Cap-Eden Roc, located outside of Cannes in the south of France. Timed to correspond with the Cannes Film Festival, the annual event is a fundraiser for HIV cure research. Hosted by Kevin Spacey, this year’s disco-themed event raised over $25 million. Among others in attendance were Harvey Weinstein, Dame Helen Mirren,
amfAR ambassador Milla Jovovich, Heidi Klum, Faye Dunaway, Adrien Brody, and amfAR chairman Kenneth Cole. The event has been a frequent hot spot for heists, due to the dozens of diamonds on hand, both worn by guests and auctioned off, so there were nearly as many bodyguards in attendance as guests. An additional summer event in New York, hosted by generationCURE ambassador Kelly Osbourne raised more than $65,000. The amfAR’s “Countdown to a Cure for AIDS,” which the evening helped support, is a research initiative aimed at finding a broadly applicable cure for HIV by 2020.— SAVAS A B A DS I D I S
RENOWN HIV ACTIVIST BECOMES MAYOR IN PENNSYLVANIA E A R L I E R T H I S Y E A R , I N A unanimous vote, the city council of Milford
Borough, Pennsylvania, chose HIV-positive activist, author, and entrepreneur Sean Strub as the city’s new mayor. Strub is the founding executive director of the Sero Project, which leads the HIV anti-criminalization movement in the U.S. “It isn’t something I sought or had any ambition to hold,” Strub tells Plus. “But when our mayor resigned, he and members of the council asked me to consider whether I would [become mayor]. I love Milford and have put a lot of effort into community activities here, so I was glad to agree.” Outgoing Mayor Bo Fean told Milford Now, that Strub (who also runs a local boutique property, Hotel Fauchere) was a great choice because he “brings a good business sense and community involvement to the table and I think he can promote the borough with his tourism knowledge.” The town of roughly 1,100, is the seat of Pike County, in the entire Upper Delaware River region. Strub was the founder of Poz and MAAM magazines. “I’ve got no further political ambitions other than to see if I can help our little Borough operate more efficiently,” Strub says. “And protect and enhance the quality of life of those who live in, visit, or do business in Milford.”
— JACO B A N D E R S O N - M I N S H A L L
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BUZZWORTHY
AT T H I S Y E A R ’ S AIDS/LifeCycle—the annual fundraising event where thousands bike the 545-miles from San Francisco to Los Angeles— YouTube star Davey Wavey photographed Positive Pedalers for End Stigma, a special photo campaign to show HIV-positive people thriving. Combining repurposed bike parts, DirtyFit underwear, and AIDS-awareness red draped over real men’s bodies, created fabulous and moving images. Known as Pos Peds, the group of cyclists living with HIV now numbers more than 600. They lead off each AIDS Life/Cycle ride and so far have raised more than $1 million for the ride’s two charities: San Francisco AIDS Foundation and the L.A. Gay & Lesbian Center.— DAV I D D U R A N
12 | SEP TEMBER/OCTOBER 2016
PHOTO CREDIT
Positive Pedalers Get DirtyFit With Davey Wavey
OPPOSITE PAGE: (TOP) The Positive Pedalers (left to right): CB Kirby, Andrew Wilson, Jamil Eric Wilkins, Larry Bryant, and Will Harrell (BOTTOM) Jamil Eric Wilkins
AP/ WALTER ORLANDO
THIS PAGE: (TOP) CB Kirby (BOTTOM) Larry Bryant
NEW MENINGITIS OUTBREAK CAUSE FOR CONCERN Here’s why you should get a vaccine. M E N I N G I T I S I S B AC K AG A I N , and this time the outbreak that's ripping through the Los Angeles gay and bi community and has left one person dead, and 22 others infected, reiterating calls for those living with HIV to get vaccinated. “Meningitis is a highly-contagious, fast-moving disease that leads to death in 20 percent of cases,” Anthony Hayes, Public Affairs and Policy Vice President at Gay Men’s Health Crisis said during an earlier outbreak in New York City. “People living with HIV and AIDS are at greater risk than the general population of acquiring the infection.” Because of this increased risk, the U.S. Advisory Committee on Immunization Practices recommends that all people living with HIV “should be routinely vaccinated with the meningococcal vaccine that protects against serogroups A, C, W, and Y disease (MenACWY).” The disease causes swelling of the membranes that cover the brain and spinal cord. It’s unusual because it can be spread by viruses, fungi, bacteria, and protozoans—and treatment depends on which vector it was caused by. While viral meningitis is most common, bacterial meningitis is more severe and can kill within hours of infection, or leave survivors with brain damage, learning disabilities, or hearing loss. The current Southern California outbreak is an invasive meningococcal disease caused by the bacteria Neisseria meningitides and occurring primarily among gay and bisexual men. Vaccines for meningitis are not good for life, so check with your doctor to see if your last meningitis vaccine is sufficient protection. If not, it’s time to re-up. Turning down the shot could be a fatal decision. — E R M HIVPLUSMAG.COM
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BUZZWORTHY 70% of Adults Think Hetero Anal Sex Protects From HIV
Russians Blame HIV on Condoms?
A recent study on heterosexual anal intercourse suggests that couples feel that it is a safe way to avoid HIV and other sexually transmitted infections. The study was presented at the 2016 American Congress of Obstetricians & Gynecologists annual meeting by a team of physicians from the University of Washington in Seattle. The Survey of Motivations for Anal Sex among Heterosexuals (dubbed SMASH) recorded behaviors of 5,000 American men and women 15 to 50 years old. Lead researcher Dr. Lyndsey Benson sees “many knowledge gaps” in regards to what Americans know about anal sex, including information about condom use, frequency of engaging in anal versus penis into vagina (PIV) sexual practices, and knowledge of HIV risks. A full 36 percent of women surveyed reported engaging in heterosexual anal intercourse at least once and a disconcerting number of straight men and women were engaging in anal sex as a way to avoid sexually transmitted infections including HIV. More than 70 percent of adults in the study incorrectly believe that vaginal intercourse is higher risk than receptive anal intercourse. Among those that had anal sex, 10 percent reported they had done so as a form of contraception at least once as well. While pregnancy through anal sex is impossible, it is considered the riskiest activity for sexually transmitted infections because the anus does not naturally lubricate like the vagina. The anus is small, easily tears, and is host to both bacteria and the type of cells that are particularly appealing to STIs like gonorrhea, herpes, and chlamydia. Should there be a tear in the anal tissue (which occurs frequently with both anal sex and bowel movements), or an open pathway to the bloodstream such as through hemorrhoids, it is very possible to transmit HIV to a partner.— E R M
In an odd piece of agitprop whose headline reads like an Onion article, yet appears to be endorsed by the Kremlin, a Russian study actually blames condoms for the spread of HIV there. The Russian Institute for Strategic Research (RISR), which was set up by the Kremlin in 2012, presented a report this summer that casts doubt over the validity of welldocumented statistics showing the spread of HIV in Russia. It’s worth noting that one of stated goals of the RISR is “familybased solutions as a strategy for overcoming depopulation,” which is perhaps why it’s not a surprise to see that the study’s authors alluded to “traditional values” being the route to stopping the spread of HIV, blaming promiscuity and homosexuality for infections. Tatyana Guzenkova, deputy head of the organization, presented the report, according to the Russian daily newspaper Kommersant. It’s not a stretch to imagine this being used by the Kremlin to buttress its ongoing hostility towards Russia’s LGBT movement though internal debate about the study was reportedly quite vocal with the head of the Federal Center for Fighting AIDS, Vadim Pokrovsky, reminding reporters of the importance of focusing on condoms to reduce the spread of HIV.— SA
BAD MONTH FOR CONDOMS
A new report, published in the May issue of the journal AIDS, concluded that condomless sex continues to increase among men who have sex with men, but the trends are not explained by serosorting or ART. "Our data suggests that condom use has decreased among [men who have sex with men] and that the trends are not explained by serosorting, seropositioning, PrEP use, or HIV treatment,” noted the researchers, who worried that “the benefits of [antiretrovirals] in reducing transmission of HIV” could be “undermined,” without increased promotion of condoms and access to PrEP. The scientists reviewed data gathered by The National HIV Behavioral Surveillance Survey, which was conducted in up to 21 cities in 2005, 2008, 2011, and 2014. The survey asked more than a thousand men whether they used a condom with their last anal sex partner. They found that declines in condom usage where seen across the board among men, whether or not their sexual partners were of the same HIV status and regardless of whether they knew their partners’ HIV status. In the nearly decade between 2005 and 2014, the number of HIV-negative gay and bisexual men who reported having sex without a condom rose from 29 percent to 41 percent. As AIDSMap points out, “Condom use began to fall long before PrEP became available.”
14 | SEP TEMBER/OCTOBER 2016
— JACO B A N D E R S O N - M I N S H A L L
SHUTTERSTOCK
Over 40 Percent of Gay & Bi Men Are Having Condomless Sex
M·A·C Cosmetics named Ariana Grande to this year’s Viva Glam campaign. Now you can go super pink with Viva Glam products and 100 percent of the selling price goes towards the M·A·C AIDS Fund.
AP PHOTOS (BECKHAM, LOVATO); COURTESY HRC (BUILDING)
The Washington, D.C., headquarters of the Human Rights Campaign, the nation’s largest LGBTQ rights organization, was transformed into a powerful tribute to the victims of the June massacre in Orlando, Florida, that left 49 people dead. HRC hung large-scale images of every victim in 49 windows of its building. HRC handed passersby memorial programs with the photos, names, and ages of the victims. “The victims were gunned down in a place they felt free to be themselves,” said HRC’s Jay Brown. “In remembering their lives, we owe them boldness and strength and a show of force that cannot be ignored.” David Beckham visited HIV-positive kids in Makhewu, Swaziland. The 41-year-old athlete told The Daily Mail. “Many of the children I met, some of whom were the same age as my own children, had lost one or both parents to AIDS and are themselves now living with HIV. The David Beckham Unicef Fund is trying to help the region's drought-impacted people as well. “People living with HIV are extremely vulnerable to food insecurity, malnutrition, and income shocks.”
OUR GREAT ALLIES Demi Lovato delighted at the Billboard Music Awards wearing a tee emblazoned with a symbol of transgender solidarity. In the midst of a national debate over trans people’s right to use the bathroom of their choice, GLAAD President and CEO Sarah Kate Ellis called Lovato “a fearless ally for LGBT equality and acceptance…who's sending an invaluable message of support to transgender people everywhere.”
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WHAT IS GENVOYA®? GENVOYA 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 and have never taken HIV-1 medicines before, or people who are replacing their current HIV-1 medicines and whose healthcare provider determines they meet certain requirements. These include having an undetectable viral load (less than 50 copies/mL) for 6 months or more on their current HIV-1 treatment. GENVOYA combines 4 medicines into 1 pill taken once a day with food. GENVOYA is a complete HIV-1 treatment and should not be used with other HIV-1 medicines. GENVOYA does not cure HIV-1 or AIDS. To control HIV-1 infection and decrease HIV-related illnesses, you must keep taking GENVOYA. Ask your healthcare provider if you have questions about how to reduce the risk of passing HIV-1 to others. Always practice safer sex and use condoms to lower the chance of sexual contact with body fluids. Never reuse or share needles or other items that have body fluids on them.
IMPORTANT SAFETY INFORMATION
What is the most important information I should know about GENVOYA? GENVOYA may cause serious side effects:
• Build-up of an acid in your blood (lactic acidosis), which is a serious medical emergency. Symptoms of lactic acidosis include feeling very weak or tired, unusual 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 “teacolored” urine, light-colored bowel movements (stools), loss of appetite for several days or longer, nausea, and/or stomach pain. • You may be more likely to get lactic acidosis or serious liver problems if you are female, very overweight, or have been taking GENVOYA for a long time. In some cases, lactic acidosis and serious liver problems have led to death. Call your healthcare provider right away if you have any symptoms of these conditions. • Worsening of hepatitis B (HBV) infection. GENVOYA is not approved to treat HBV. If you have both HIV-1 and HBV and stop taking GENVOYA, your HBV may suddenly get worse. Do not stop taking GENVOYA without first talking to your healthcare provider, as they will need to monitor your health.
medicines that should not be taken with GENVOYA. Do not start a new medicine without telling your healthcare provider. • The herbal supplement St. John’s wort.
• Any other medicines to treat HIV-1 infection.
What are the other possible side effects of GENVOYA? Serious side effects of GENVOYA may also include:
• Changes in body fat, which can happen in people taking HIV-1 medicines. • Changes in your immune system. Your immune system may get stronger and begin to fight infections. Tell your healthcare provider if you have any new symptoms after you start taking GENVOYA. • Kidney problems, including kidney failure. Your healthcare provider should do blood and urine tests to check your kidneys. If you develop new or worse kidney problems, they may tell you to stop taking GENVOYA. • 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 GENVOYA 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 GENVOYA? • 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 overthe-counter medicines, vitamins, and herbal supplements. Other medicines may affect how GENVOYA works. Keep a list of all your medicines and show it to your healthcare provider and pharmacist. Ask your healthcare provider if it is safe to take GENVOYA with all of your other medicines. • If you take antacids. Take antacids at least 2 hours before or after you take GENVOYA. • If you are pregnant or plan to become pregnant. It is not known if GENVOYA can harm your unborn baby. Tell your healthcare provider if you become pregnant while taking GENVOYA. • If you are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed. HIV-1 can be passed to the baby in breast milk.
Who should not take GENVOYA?
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.
• Certain prescription medicines for other conditions. It is important to ask your healthcare provider or pharmacist about
Please see Important Facts about GENVOYA including important warnings on the following page.
Do not take GENVOYA if you take:
Ask your healthcare provider if GENVOYA is right for you, and visit GENVOYA.com to learn more.
GENVOYA does not cure HIV-1 or AIDS.
SHOW YOUR
POWER
Take care of what matters most—you. GENVOYA is a 1-pill, once-a-day complete HIV-1 treatment for people who are either new to treatment or people whose healthcare provider determines they can replace their current HIV-1 medicines with GENVOYA.
IMPORTANT FACTS This is only a brief summary of important information about GENVOYA and does not replace talking to your healthcare provider about your condition and your treatment.
(jen-VOY-uh) MOST IMPORTANT INFORMATION ABOUT GENVOYA
POSSIBLE SIDE EFFECTS OF GENVOYA
Genvoya® may cause serious side effects, including:
GENVOYA can cause serious side effects, including:
• Build-up of lactic acid in your blood (lactic acidosis), which is a serious medical emergency that can lead to death. Call your healthcare provider right away if you have any of these symptoms: feeling very weak or tired, unusual muscle pain, trouble breathing, stomach pain with nausea or vomiting, feeling cold (especially in your arms and legs), feeling dizzy or lightheaded, and/or a fast or irregular heartbeat. • Severe liver problems, which in some cases can lead to death. Call your healthcare provider right away if you have any of these symptoms: your skin or the white part of your eyes turns yellow (jaundice), dark “tea-colored” urine, light-colored bowel movements (stools), loss of appetite for several days or longer, nausea, and/or stomach pain. • Worsening of Hepatitis B (HBV) infection. GENVOYA is not approved to treat HBV. If you have both HIV-1 and HBV, your HBV may suddenly get worse if you stop taking GENVOYA. Do not stop taking GENVOYA without first talking to your healthcare provider, as they will need to check your health regularly for several months. You may be more likely to get lactic acidosis or severe liver problems if you are female, very overweight, or have been taking GENVOYA for a long time.
• Those in the “Most Important Information About GENVOYA” section. • Changes in body fat. • Changes in your immune system. • New or worse kidney problems, including kidney failure. • Bone problems. The most common side effect of GENVOYA is nausea. These are not all the possible side effects of GENVOYA. Tell your healthcare provider right away if you have any new symptoms while taking GENVOYA. Your healthcare provider will need to do tests to monitor your health before and during treatment with GENVOYA. BEFORE TAKING GENVOYA Tell your healthcare provider if you:
• Have or had any kidney, bone, or liver problems, including hepatitis infection. • Have any other medical condition.
ABOUT GENVOYA
• Are pregnant or plan to become pregnant.
• GENVOYA 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. GENVOYA can also be used to replace current HIV-1 medicines for some people who have an undetectable viral load (less than 50 copies/mL of virus in their blood), and have been on the same HIV-1 medicines for at least 6 months and have never failed HIV-1 treatment, and whose healthcare provider determines that they meet certain other requirements. • GENVOYA does not cure HIV-1 or AIDS. Ask your healthcare provider about how to prevent passing HIV-1 to others. Do NOT take GENVOYA if you: • Take a medicine that contains: alfuzosin (Uroxatral®), carbamazepine (Carbatrol®, Epitol®, Equetro®, Tegretol®, Tegretol-XR®, Teril®), cisapride (Propulsid®, Propulsid Quicksolv®), dihydroergotamine (D.H.E. 45®, Migranal®), ergotamine (Cafergot®, Migergot®, Ergostat®, Medihaler Ergotamine®, Wigraine®, Wigrettes®), lovastatin (Advicor®, Altoprev®, Mevacor®), methylergonovine (Ergotrate®, Methergine®), midazolam (when taken by mouth), phenobarbital (Luminal®), phenytoin (Dilantin®, Phenytek®), pimozide (Orap®), rifampin (Rifadin®, Rifamate®, Rifater®, Rimactane®), sildenafil when used for lung problems (Revatio®), simvastatin (Simcor®, Vytorin®, Zocor®), or triazolam (Halcion®). • Take the herbal supplement St. John’s wort. • Take any other HIV-1 medicines at the same time.
• Are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed if you have HIV-1 because of the risk of passing HIV-1 to your baby. Tell your healthcare provider about all the medicines you take:
• Keep a list that includes all prescription and over-the-counter medicines, vitamins, and herbal supplements, and show it to your healthcare provider and pharmacist. • Ask your healthcare provider or pharmacist about medicines that should not be taken with GENVOYA. HOW TO TAKE GENVOYA
• GENVOYA is a complete one pill, once a day HIV-1 medicine. • Take GENVOYA with food. GET MORE INFORMATION
• This is only a brief summary of important information about GENVOYA. Talk to your healthcare provider or pharmacist to learn more. • Go to GENVOYA.com or call 1-800-GILEAD-5 • If you need help paying for your medicine, visit GENVOYA.com for program information.
GENVOYA, the GENVOYA Logo, GILEAD, and the GILEAD Logo are trademarks of Gilead Sciences, Inc., or its related companies. All other marks are the property of their respective owners. Version date: November 2015 © 2016 Gilead Sciences, Inc. All rights reserved. GENC0048 04/16
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THE16 MOST AMAZING HIV+ PEOPLE OF 2016 HIVPLUSMAG.COM
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SHARMUS OUTLAW DURING THE FIRST NATIONAL SEX WORKER RIGHTS RALLY, WASHINGTON D.C., DECEMBER 17, 2008.
SHARMUS OUTLAW Discrimination is literally killing trans women: Sharmus Outlaw is just the latest. BY THE TIME you read this, Sharmus Outlaw will be dead. The 50-year-old activist for transgender and sex worker rights is currently dying of cancer. But Outlaw’s rapidly declining health is as much a product of our country’s systematic discrimination of trans women as it is lymphoma. The 2011 report on trans Americans, Injustice at Every Turn, revealed that trans people face discrimination in nearly every aspect of their lives, including health care. While 48 percent of trans people delay or avoid necessary medical care because they cannot afford it, another 19 percent have been refused care, and 28 percent faced such extreme discrimination that they no longer sought medical care. Since Outlaw could barely gather enough energy to say goodbye, her close friend Penelope Saunders—coordinator of the Best Practices Policy Project, which produces sex worker rights materials for policy, research, and academic needs—did the talknig. “Like many in the trans and sex work community,” Saunders says, “Sharmus has never had adequate health care coverage. She has patched together care from systems available for low income people, for people living with HIV, and emergency care.” It’s not just that trans women are denied health care— which they are—the truth is that the pervasive discrimination that trans women face on a daily basis forces many into survival sex work. Outlaw told the Washington Post in 2008, “Sex work is about survival...We are struggling as transgender women to make ends meet and to survive in today’s world.” The combined impact of poverty, homelessness, violence, racism, transphobia, criminalization, and HIV stigma coalesce to not only create but also exasperate medical conditions. No stranger to injustice, Outlaw has been fighting it for decades. Outlaw and Saunders met in 2000, when Saunders was the newly appointed executive director of HIPS, an organization that provides harm reduction services, advocacy, and community engagement for those impacted by sex work and/or drug use. “She and I recognized in each other a commitment to ensuring that the voices most silenced, need to be heard. Of equal importance to Sharmus… is ensuring that resources flow to and are controlled by the transgender community, especially the community of color. In those early days she would say to me every time we met, ‘The girls need jobs. They need jobs!’” Outlaw also excelled at connecting the right people (and ideas) at the right time. “She was the first person who spoke to me about the need to employ transgender women of color and sex workers at HIPS.” “I had not thought of working at an organization to serve the sex worker and trans community before Sharmus introduced me to the idea,” Thomas, a trans woman of color and licensed social worker.
20 | SEP TEMBER / OCTOBER 2016
PJ STARR
BY JACO B A N D E R S O N - M I N S H A L L AND ELAINE MENDUS
BEFORE I’M TRANSGENDER, BEFORE I’M A SEX WORKER, BEFORE I AM ANYTHING, I’M HUMAN. Saunders says Outlaw is also “the mastermind behind the development of Different Avenues, which sprang from the idea that many people—including youth— engage in sexual economies for the things they need to survive. But most never identify as ‘sex workers.’ In fact, most often have identities imposed on them, in ways that diminish their possibilities. For Sharmus, who describes herself as a humanist, the greatest indignity is to not be able to define yourself and to name who you are.” During a Different Avenues planning session in 2001, Outlaw suddenly burst out, “I’m tired of people having to be MSM or a sex worker or [HIV-positive] to be able to come to a group.” From that point on, Saunders says, offering services without requiring labels “was the guiding principle of Different Avenues, allowing the organization to create spaces where people could define their own experience and engage in HIV services in new ways; reaching new, underserved communities in the D.C. area. That was all Sharmus.” Darby Hickey, a former researcher for the Alliance for a Safe & Diverse D.C., worked with Outlaw to assess the impact of policing and the Prostitution Free Zone policy in the nation’s capital (the failing policy was later repealed). “Whether working together on community based research, educating people on the streets about their rights, or preparing for a hearing before the D.C. Council,” Hickey says. “I have always felt lucky to be a comrade in arms with Sharmus. The discrimination, violence and police harassment she faced only added fuel to her passion for social justice.” In addition to her involvement with HIPS and Different Avenues, Outlaw served on D.C.’s HIV Prevention Community Planning Group, and worked or volunteered at numerous other community-based organizations in the D.C. area, including Casa Ruby, Us Helping Us, Sexual Minority Youth Assistance League, Transgender Health Empowerment, and Metro Teen AIDS.” In 2009, Outlaw’s work was recognized by the Washington Peace Center with the “Port in the Storm” award; but Saunders always felt Outlaw deserved more. “It seems to me that she never fully gets her due. She is very rarely acknowledged as the founder of movements and the trail-blazer that she is.” Having always seen the rights of trans women tied up
with those who work in the sex industry, Outlaw participated in the Global Network of Sex Work Projects protests at International AIDS conferences and by 2007, she was a leader of the global sex worker rights movement speaking at the International Harm Reduction Conference in Poland. In 2010, Outlaw collaborated with sex worker advocate Cris Sardina to transform Desiree Alliance from an annual conference into a nonprofit network of organizations, communities, and individuals providing services to sex workers. Outlaw served as co-coordinator of the new organization until she left in 2015. “Sex workers have never been consulted adequately—if at all—on HIV policies,” says Saunders. “And the United States is wildly out of step with global approaches to rightsbased health [services for] sex workers.” Setting out to change that, with funding from the Elton John AIDS Foundation, and the support of Best Practices, Outlaw led a community based research project that resulted the groundbreaking national report on the impact of HIV and HIV criminalization on sex workers and trans women. Nothing About Us Without Us: HIV/AIDS-Related Community and Policy Organizing for U.S. Sex Workers was released in December 2015, culminating several years of effort. It was in the midst of researching that report that Sharmus began to feel sick. Over six months in 2015, Outlaw visited the emergency room repeatedly for a growing list of debilitating symptoms . She was assured nothing was wrong; until last November, when the doctors could no longer deny she was seriously ill—it was as plain as the tumor on her neck. Before treatment could begin, Outlaw needed a biopsy; but the diagnostic procedure wasn’t conducted. “She was told that she needed to be on Medicaid to have a biopsy; rather than relying on the care that had been provided to her as a person living with HIV,” Sanders recalls. Weeks went by as Outlaw, her friends, and colleagues “desperately sought a way enroll her.” All the while, the tumor kept growing. Rapidly. “Upon hearing that her papers were being ‘kicked back’ and delayed [again],” Saunders says. “I called every number on the D.C. site for Medicaid. Every number was disconnected or rang out without any answer.” Last December, a desperate Outlaw stumbled into a D.C. emergency room and demanded that they biopsy the tumor. They did. Outlaw had “a highly aggressive form of lymphoma.” She had just begun chemo when the report was released. Outlaw sent a message to the audience at the U.S. Human Rights Network via Saunders. “Sharmus said, ‘I’ve found out why my Medicaid application was delayed. I want the audience to understand this: my application was delayed because they were ‘confused’ over my gender marker. Tell people that my experience is what the report is about. This is the experience of transgender women. Our vital health care is denied because we don’t have our rights.’” “Like so many transgender leaders,” Saunders says, “Sharmus has achieved all [the] above with no job security, almost no income, and without the security of even having a place to call her own. In all the years I have known Sharmus, she has never had her own space, sometimes her living situation has been extremely tenuous. Sharmus has been arrested under unjust and discriminatory laws numerous times—as she has been with her community in public space, and as she has sought ways to live. While it has been truly wonderful to receive some funding for her HIV related work from the Elton John AIDS Foundation, that seed funding could not approach a salary for her work—we received $12,500 for advocacy and to write the report in 2015. Sharmus’ experience is not an anomaly, it is the norm for sex worker leaders and trans leaders.” Yet, even as her health declined, Outlaw continued to advocate. Last year, Outlaw became the U.S. representative of the Program Advisory Committee for the Red Umbrella Fund, the first global grant-making foundation focused on supporting sex worker-led organizations. Dennis van Wanrooij of Red Umbrella calls Sharmus’s contribution “unmeasurable. Her input, knowledge and experience helped us to guide our grant making process. Sharmus is always in our heart and in the work we do.” Saunders says, Outlaw never lost her belief in the future, looking toward, “a better day when we will all be enlightened with the idea that together we are human. Sharmus would like nothing more, than for us all to accept the humanity of transgender people, sex workers, and people living with HIV.” It’s a sad statement about the world we live in, that a person’s humanity is questioned not because of the hate in their hearts but because of their gender, their status, or their jobs. Speaking at the International AIDS Conference in Washington D.C. in 2012, Sharmus said, “Before I’m transgender, before I’m a sex worker, before I am anything, I’m human.” l HIVPLUSMAG.COM
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BY SAVAS A B A DS I D I S A N D JACO B A N D E R S O N - M I N S H A L L
K E V I N S E S S U M S V I R T UA L LY created the personality-driven culture we live in. Beginning as executive editor at Andy Warhol’s Interview, and later as contributing editor under Tina Brown’s tenure at Vanity Fair, Sessums was famous for his one-on-one celebrity profiles that graced magazine covers. He went on to found FourTtwoNine magazine, where he served as editor in chief, and today he is the editor at large for the San Francisco-based The Curran. Sessums is a rarity: an HIV-positive journalist who also written two New York Times bestselling memoirs: Mississippi Sissy and, more recently, I Left It on the Mountain. Sessums opens up about his sex, drugs, mortality, and coming out again.
Tell us about finding out you are HIV-positive? I was coming off a drug binge in South Beach, where I had a pied-a-terre, and came down with the textbook symptoms. I got tested and heard the dreaded words, “You are HIV positive” from a doctor who was a stranger to me. But I guess that made sense—since it was a stranger no doubt who infected me—because my drug sex was always with strangers. Oddly, the diagnosis didn’t make me get sober, but pushed me deeper into my addiction, because I thought I had nothing else to lose. It wasn’t until several years later—after I had indeed lost it all—that I began my journey toward sobriety. I think part of my addiction was the grieving process for my HIV-negative self. That was the death that occurred: my HIV-negative self was no more. But my HIV-positive self lives on—and is a much better and honorable and empathetic self because of it. I wish I could have gotten to this place of acceptance and living a more honorable and sober life without having to be
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You’ve written about being sexually, saying that, “Violation—not love, not intimacy—would be what I would come to seek sexually the rest of my life.” Do you still feel like you seek out violation? I don’t seek it out anymore, no. I barely seek out sex of any kind—especially recreational sex. What changed is that I got sober four years ago. Also, I turned 60. I have had lots, and lots, and lots of recreational sex in my life and it just doesn’t hold the same appeal to me that it once did. The kinkiest thing I can think of right now is intimacy and monogamy because what we consider kinky is often what is outside our experience and those are two things I’ve always had problems with. Now that I’ve turned 60, I find those two things enticing. Do you see becoming HIV positive as a result of that attraction to debasement? Not exactly, no. My drug addiction led me to some debasing experiences, and as a result of that I became HIV-positive. But I blame the addiction, not the need for debasement—but maybe that itself is what drug addition is. You lost both your parents before you were 9 years old. In I Left It On the Mountain you write about being “fatherless,” but you are also “motherless.” Did that missing father figure impact you more than your missing mother figure? Odd. I think of myself as parentless—not fatherless or motherless. My grandparents raised my brother and sister and me. I never thought of them as substitute parents though. I only thought of them as Mom and Pop—as we called them. It is only recently I realized the sacrifice that they made for us. Now that I have arrived in my 60s and yet still shy of the ages they were when they took in three small children who were in the midst of the kind of grief we didn’t understand even as my grandparents were certainly
CAMERON LEE/CAMERONLEEART.COM
KEVIN SESSUMS
HIV-positive. I won’t lie about that: I wish I were not positive. But that has not been my journey. It is a journey that continues. And I am grateful for it.
understanding theirs, having lost their daughter, our mother, when she was only 32 years old. I’ve always said that I was weaned on death having lost my parents; my father in an automobile accident when I was 7 and my mother to cancer when I was 8. My brother was 5 and 6 and my sister was 3 and 4. They weren’t old enough to quite understand it all. I was just old enough to get it. Yep, I was weaned on it. Death was the third tit of my childhood. I’ve certainly suckled at abandonment for most of my life.
THE KINKIEST THING I CAN THINK OF RIGHT NOW IS INTIMACY AND MONOGAMY. Does being a gay, HIV-positive man impact your experience of fatherlessness in any way? No, unless you mean that point at which we all, no matter our sexuality or HIV status, must father ourselves as men. You’ve had a number of visions or hallucinations. You didn’t rush out to see a doctor; instead you began taking more drugs in the hope of experiencing more visions. Which was harder to give up? The drugs or the visions? They were intertwined. I don’t really miss the drugs but I do, yes, miss the visions from time to time. I always felt myself a bit mystical. I prefer to see this part of my life experience as a mystic one. Sometimes I do consider myself a mystic. I’ve never admitted that out loud. I think I just came out of a closet! One thing I have discovered—nothing mystic about this—we never run out of closets from which to emerge. And how has your HIV status fit into your sense of spirituality? I pray each morning—after I daily surrender in a conscious way in order to stay sober—to accept anything that happens to me, whether it is the worst thing possible or the best thing possible, in exactly the same way: with grace and dignity and humility. I think my journey toward all three [started] the day I received my HIV diagnosis; although I had no idea then that was what was occurring. You close the memoir with a note of self-forgiveness. Why do you think we need to forgive ourselves? I think we are born from a free-floating kind of consciousness into the human experience so that consciousness can then experience what it is like to be human, which, let’s face it, is about pain and suffering much of the time. From the moment we enter crying into the world and our mothers are screaming in pain to the emotional and physical wear and tear of the human existence, we are in some mode of each. I think when we die we are finally born back into the consciousness from which we came and, with each of our human experiences, we add to consciousness’s knowledge and, with each of our tiny deaths, its infinitesimally greater omniscience. Let’s face it: our whole life is a journey toward healing. If there is a heaven, I think that is it. I think heaven is that moment we die and are born back into consciousness, for I think that is the moment we are finally healed of our humanness. I know this sounds like gobbledegook. I had to get sober to sound this high. l
KAHLIB BARTON BY JACO B A N D E R S O N - M I N S H A L L
E A R L I E R T H I S Y E A R , the Centers for Disease Control and Prevention issued a report predicting that half of all black gay and bisexual men will become HIV-positive in their lifetimes. Kahlib Barton wrote in OutSmart magazine that at the time all he could do “was drop down on my knees and cry.” Already poz himself, 24-year-old Barton wasn’t grieving for himself, but for others he feared would be forced to repeat his HIV story, writing, “With the release of the CDC report, my goal has become to never have another young person in the South have an experience parallel to mine. I believe the only way we can achieve this goal is prioritizing the most marginalized and exposing every system of oppression.” Barton grew up in the rural Marshall, Texas, where he feared coming out as gay. As a teen he was unable to “even ask questions about my sexuality. I wanted to use protection, but had no idea where I could access it.” After being diagnosed with HIV in 2011—while at college and still technically a teenager—Barton felt even more alone. For the next three years, the closest he came to care was a series of phone calls offering him treatment at a clinic he had no transportation to. Everything changed when he moved to Denver, Colorado, to pursue a degree in social work in 2014. Within a year Barton was not only under a doctor’s care but actively involved in the local HIV community, working with an HIV support group (TRADE), AIDS United, and All the TEA (Teach, Empower, Advocate).
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As a National Minority AIDS Council Youth Scholar, Barton attended the 2015 United States Conference on AIDS, where he learned about Advocates for Youth and National Youth HIV and AIDS Awareness Day. When he returned to Denver he worked with TEA to petition the city to make a proclamation supporting the day. “We were surprised at how quickly and enthusiastically the mayor responded,” Barton says. “The proclamation was signed within a week.” Soon afterwards, NMAC invited Barton to Washington, D.C., for a briefing to inform Congress about HIV among young people. “I was humbled to be in a room with such amazing advocates, able to address lawmakers directly about why the government should prioritize young people in the fight against HIV and AIDS,” Barton said at the time. That experience so influenced Barton that he relocated permanently to D.C., even though that meant leaving his position as vice-chair on the Denver HIV Resources Planning Council, where he had helped determine how Ryan White funds were allocated in the city (and where he’d been the youngest person to serve). Barton joined Young Black Gay Men’s Leadership Initiative in D.C., where he was recently elected vice chair. An initiative of the National Black Gay Men’s Advocacy Coalition, the Leadership Initiative addresses issues affecting black and Latino gay, queer, bi, and trans men—including HIV, homelessness, and professional development. At the Initiative, Barton helped pilot the annual Build-A-Brother Institute in partnership with the ational African-American MSM Leadership Conference on HIV/AIDS and Other Health Disparities. As a member of the fundraising committee, he helped raise enough money to send 80 people to the group’s annual policy and advocacy summit in Baton Rouge, Louisiana. More recently, Barton co-founded an empowerment campaign called Black Gay Magic. Barton is also a program coordinator at Us Helping Us, People Into Living Inc, the largest gay-identified, black AIDS organization in Washington, D.C., where he works on community level interventions with special emphasis on PrEP and Treatment as Prevention. A one-time Greater Than AIDS Youth Ambassador, Barton was also named one of True Color Fund’s 2016 “40 of the Forty,” representing the 40 percent of homeless youth who identify as LGBTQQ. “If an individual does not have housing, it is highly unlikely that they will be able to prioritize their health,” says Barton. “Agencies who work with youth need to recognize that some…[are] LGBT and may be experiencing issues such as homelessness.” The 24-year-old says he is proudest of his group’s clients. “This is more of an accomplishment for them than me, but the reason I do what I do is so that people like me will be able to live longer, healthier, fuller lives.” A strong advocate for under-served, deserve populations to see themselves reflected in HIV prevention and outreach campaigns, Barton sees some signs of change. “I was very pleased to see campaigns like Greater Than AIDS and #DoingIt prioritized the need for more diverse representation, not only in race but in gender. I have seen these images on billboards, buses, subways, and magazines, and it has been quite refreshing.” Of course organizations can’t just stop there. The next step, he says, is for organizations and agencies to themselves become more representative of those they serve. “If the majority of the population they work with are of color or trans populations, then the majority of the people employed with the agency should reflect that.” Addressing health disparities facing black men shouldn’t fall solely on the shoulders of non-profits. “We have to address the stigma of feminization in the black community. As long as individuals in the black community continue to believe that any sign of weakness in a man is a threat to our race then we will continue to miss opportunities to educate young black gay men on their sexual health.” Plus, he says, “We have to remind young black gay men of their brilliance. Any time we speak of black gay men, the conversation automatically floats to HIV when there are so many other issues affecting us. We experience ostracism in our homes and even more within our communities and much of it is because we do not understand our own worth. People have to recognize and respect our genius. This will empower us to use that genius to create a better tomorrow for ourselves and each other.” l
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ENRIQUE MENENDEZ BY D I A N E A N D E R S O N - M I N S H A L L
T W E N T Y F I V E Y E A R S AG O, Enrique Menendez was opening in the original Broadway company of Miss Saigon. The handsome young, first generation Mexican-American (his father emigrated from Mexico and his mother emigrated from Spain) was killing it on stage. He was also living with HIV. Diagnosed in 1989, while on tour with the first national production of Anything Goes, Menendez was out and raising money for HIV almost immediately (he first sang in a benefit for Broadway Cares/Equity Fights AIDS that same year). This 50-year-old is now an AIDS veteran, having combatted survivor’s guilt, addiction, and over two dozen co-morbidities or side effects from lipodystrophy to peripheral neuropathy. He’s spent two decades as a successful actor, dancer, producer, writer, director, choreographer, talent recruiter, and speaker (there’s more, a lot more), yet his success educating people about living with HIV might be his proudest.
First, tell me about Frank Yamrus’s Long Term Survivor Project. You originally planned to be photographed before and after Sculptra treatment. Was that your idea? It simply documents survivorship—the physical, psychological and emotional turmoil AIDS has caused over the last 30 years. I was introduced to Frank by a friend on Facebook. Quite frankly, having been a commercial actor I was kind of turned off by the work at first. After some contemplation, I realize, I was struggling at looking at people with lipoatrophy. It triggered the shame I have about having that side effect. So, in Facebook messenger, I offered him the choice of shooting me before or after my Sculptra treatment. My rationalization was, “I would prefer to wait from a self-esteem point of view. You are the artist, so I am open to following your lead.” After that, my therapist came up with the idea that I offer him to photograph me, before and after. I surrendered, threw the ball in his court, [and told him, “Since you are the artist, if that fits within your concept, I am game. From a spiritual place, it might help me deal with the anger I have about the side effects of long-term HIV medication usage. I’ll take your lead.” I sat with Frank last Sunday for the first time and who knows, at this point, I may not even get the treatment. I did have good results in the past and will reassess in about a month or so. Let’s talk about your short film, AboutFace. While in rehearsal for Miss Saigon, as part of our research we interviewed many Vietnam vets. I noticed that as a person living with AIDS, I could identify with a lot of the feelings they had experienced. That was when my first draft of [my poem] “Trigger” was written. By 2007, I decided to make it into a short film entitled, AboutFace, which was featured at the 2007 International AIDS Film Festival. It is a metaphysical journey of an AIDS-challenged life juxtaposed with the imagery of war. The film was also shown at The Addiction Institute Art Fair and to an International Hepatitis C Conference. Currently, I am…reworking this biopic short.
THE REST OF THE TOP 75 MOST AMAZING HIV+ PEOPLE OF 2016 So many incredible people, so few pages. Check online for our profiles of the rest of this year’s standouts. Bamby Salcedo Bob Poe Tommy Viola Alex Garner Edmund White Andy Dillehay Ruby Corado Teresa Sullivan
Bryan Psaloka Kte (Kills Crow) Shyronn Jones Patricia Johnson Chanse Kyle Loreen Willenberg Seto McCoy
Lepena Reid
Brian Ledford
Naimah O’Neal
Patricia McNeill Shelton
Venita Ray Jennifer Lester Rae Lewis Thornton Dee Dee Chamblee Mark Ebenhoch Waldemar Murray Loren Jones Meta Smith-Davis
Michael Broder Janet Kitchen
Bryan, a Lakota activist, volunteers with the Grand Rapids Michigan Red Project to help educate Native Americans about HIV.
A Colorado activist, Barb helped push through an HIV modernization bill through the state legislature, only the second in the U.S.
Scott Dukes A 28-year-old Nebraska AIDS Project community engagement coordinator, Andy says the public perception of HIV is still stuck in the 1980s there.
Danny Harris Regan Hoffman
Patrick Donnelly
Bre Campbell
Glen Weinzimer
Ari Hampton
Ashton P. Woods
Reggie Jenkins
Brendan Shucart
At 26, Rob was runner up on Bravo’s Manhunt: The Search for America’s Most Gorgeous Male Model— then he found out he had HIV.
Grissel Granados Barb Cardell Ángel Luis Hernández Arianna Lint Evany Turk Eugene Huffman Scott James Jordan Joel Goodman
Pat Kelly Wilks
Rob Williams
David-Frank Ray
Miguel Caballero
Paul Stalbaum Sean McKenna Atlanta activist, Dee Dee, founder of La Gender, a regional transgender advocacy group, managed to survive the early days of AIDS to become a poz, transgender pioneer.
Kristopher Sharp Octavia Lewis Wanda Brendle-Moss Jahlove Serrano Alan Andrews-Katz Tranisha Arzah
Twenty years ago, Alan was incredibly ill, withered down to 116 pounds, and living in America’s first AIDS facility. Today, he’s r aised thousands for LGBT youth and HIV services with his annual Seattle foodie fundraiser.
“Paul represents everything that is inspiring and resilient about long-term survivors,” says Mark S. King. His Annual Poz Cruise brings together HIV+ people from around the country, many who can’t be out back home.
START HIV TREATMENT. HELP PROTECT YOUR HEALTH.
There is no cure for HIV, but find out how treatment helps make it possible to live a healthy life.
A HEALTHIER LIFE CAN START WITH HIV TREATMENT. Starting HIV treatment right after diagnosis can help stop the virus in your body. Because treatment helps lower the damage HIV causes to your immune system. Plus, doctors and scientists have found that it can help lower the risk of heart disease and certain cancers.
TREATMENT ALSO HELPS YOU PROTECT OTHERS. HIV treatment can help lower the amount of virus in your body. It can get so low, it can’t be measured by a test. It’s called being undetectable. And it helps lower the chance of passing HIV on to others by more than 90%.
TALK TO YOUR HEALTHCARE PROVIDER. Have an open conversation. When you work together it helps your healthcare provider find the treatment that’s right for you.
Watch HIV: “Treat 2 Prevent” See how staying on treatment can help protect you and the people you care about. YouTube.com/HelpStopTheVirus
STOPPING THE VIRUS CAN START WITH YOU. Here are two resources that can help.
Watch videos, share information, and see how we can all help stop the virus. HelpStopTheVirus.com YouTube.com/HelpStopTheVirus
Get the answers you need, privately, on your phone. HIVanswers.com/app
© 2016 Gilead Sciences, Inc. All rights reserved. UNBC3477 07/16
BY R I C K G UAS CO
L
ast October, I came out. Everyone who knows me was surprised. Although I’ve been openly gay most of my adult life, and I’ve been HIV-positive since 1992, I have only been on treatment for a very short time. Three years ago, I fell out of care completely and was no longer on meds. You’d think I would know better. I’m a fairly intelligent person, even if also opinionated and stubborn. Plus, I work for Positively Aware, an HIV treatment magazine, so you’d think I would be more, well, aware, of the importance of HIV treatment. Except that I had become tired and afraid. I think that as long as I have lived with HIV, I’ve always lived with some measure of fear. It
didn’t matter how healthy I was, or how sick I felt, fear has always lurked in the background. In the summer of 1992, I developed blotches on my skin. The purplish spots continued to blossom, about five new ones a week. When the fear became too much, I got tested that December: I was HIV-positive, and the spots were likely Kaposi sarcoma, an opportunistic infection that the Centers for Disease Control and Prevention had labeled as an “end-stage AIDS-defining illness.” “Good luck,” my post-test counselor said as he handed me three publications.
SHUTTERSTOCK
Something More Important Than Fear My journey back to HIV treatment.
Kaposi sarcoma is a disease in which malignant tumors can form in the skin, mucous membranes, lymph nodes, and other organs. Chemotherapy was the standard treatment for KS, but it often killed the weakest patients, and it seemed I was next. The fear of KS was overwhelming. More than 100 lesions covered my body, 50 on my head alone. I looked like I had two black eyes and a swollen lip. I began reading the three handouts I’d been given, all of which were published by Test Positive Aware Network (TPAN), an AIDS service organization in Chicago, where I live. One of them was Positively Aware. The more I read, the more my fear subsided to a level where I could think. That’s when I realized information was the key to getting a grip on my situation. I discovered a clinical trial that used interferon, a known cancer-fighting drug, to treat KS. But I’m so afraid of needles, it took more than two weeks before I could bring myself to begin the daily course of a self-administered injection of interferon into my upper thigh. Whenever I jabbed myself, I would close my eyes and look the other way. Imagine having the body aches of the flu—every single day. That was the major side effect of interferon. At its worst, I would rock back and forth at my desk, like someone experiencing withdrawal. But the interferon worked. Within two years, nearly all the lesions were gone. In 1997, protease inhibitors, the first class of effective HIV drugs, appeared. But soon afterward, people with HIV began to report side effects from the long-term use of these medications and from having lived so long with the virus. Some people experienced a redistribution of body fat, giving them gaunt-looking faces, or swollen bellies, or the appearance of a slight hunchback. So, quite frankly, I was grateful for my interferon side effects. Having had a disfiguring disease, I have become self-conscious about my appearance. My KS treatment was apparently keeping me healthy enough that I thought I could justify skipping HIV treatment. After my insurance no longer covered interferon, I stopped taking it. For a few years, I coasted. I “felt healthy enough” to refrain from HIV treatment. Then in 2011, a familiar purplish spot appeared, just below my left ankle. My KS was back. Once again, fear took hold. As months went by, I looked on as the spot slowly grew. It was only the fear that another spot might soon appear that made me see a doctor. A biopsy confirmed the diagnosis. These days, the only treatment for KS is to go on HIV medication. Reluctantly, I did, going on one of the first single-tablet regimens. The spot began to shrink, then disappear, and my viral load and T-cell count improved. The side effects came with almost the first pill. Repetitive dreams nearly as bad as those from interferon. And during the day, a depression was beginning to settle in. I was afraid that this was my new normal. I struggled for 11 months. My meds had been covered by the state AIDS Drugs Assistance Program, and my job’s insurance was about to kick in. However, the paperwork transitioning me from ADAP to private insurance had gotten lost, and I now had no way to pay for my refill. This only seemed to add insult to injury, so I walked away from treatment. I was afraid, however, of being called irresponsible—or a hypocrite. I told myself that my healthcare (or lack of it) was a personal decision. After all, I still “felt healthy enough.” But old fears lingered. Once, I had been afraid I wouldn’t live to see 30; having passed 50, I was starting to fear what might lie ahead. My fears led me back to when I first faced KS. I’d made it this far; I was damned if I was going to die like it was 1985. That’s when I decided to get back onto treatment. Four weeks later, my numbers had already significantly improved. And this time, the side effects have been negligible. No one wants to admit to being afraid. Fear can make you feel helpless and isolated. But the truth is, you are not alone. If you learn how to use it, fear can be a good thing. It can remind you that there is something more important than fear.
Rick Guasco has been creative director of Positively Aware since 2010. He occasionally posts on Facebook about his return to HIV treatment. Positive Thoughts is a project of Plus, Positively Aware, POZ, The Body and Q Syndicate, the LGBT wire service.
in the Viennese company of Les Miserables I did everything in my power to get an audition for the original London company. Since I was not successful at that, I put all of my focus onto the Broadway Company. There were over 6,000 people worldwide who auditioned for the original Broadway Company of Miss Saigon. My mentor, the associate choreographer, chose me to take over as the second dance captain. She used to tell me that I had “eagle eyes.” Well, I put this talent to use and was very proud of how clean my companies of Miss Saigon were. At one point, I took over as dance supervisor of the first National Tour. I made sure that the company was in good shape for our closing city of Vancouver.
FRANK YAMRUS (PHOTO); STEVEN DILLON (HAIR); DIEGO DIAZ (STYLIST)
You worked with the Proof Positive division of The Morgan Agency, when the agency was scouting real people living with HIV to appear in ads and public service announcements. What was that work like? Proof Positive began in 1992 and over the next two decades it put over $10 million directly into the hands of people living with HIV through pharmaceutical advertisements, endorsements, appearances, speaking engagements, and traditional placement in acting and modeling jobs. The division was credited in the Wall Street Journal… for changing the face of AIDS by promoting healthy images of people living with the disease instead of just dying from it. It gave hope and inspiration to the hundreds of thousands directly affected while helping those who did not move past the stigma and discrimination that was so prevalent at the time. I read an article about the agency and sent my headshot to the founder, Keith Lewis. The rest is history. I booked eight campaigns. I was then asked to be a talent scout for new models and I would photograph them and submit them to the agency. Ultimately, I flew to Los Angeles and served as the casting director, which I had also done in New York City. I’m really grateful to have served my HIV brothers and sisters.
There’s a line in AboutFace that says you’re battling a war that never seems to end. Still feel that way? All I can speak for is today. I feel like I have been given the gift of surrender. I wake up each morning and meditate. Quieting my mind and turning over my thoughts guide me to live in the moment. Am I perfect at it? No, and nor would I ever want to be. I have serenity in the fact that I cannot change my HIV/AIDS diagnosis. I’ve accepted this and it has given me the courage to take my medications as prescribed and let go of judgment about the side effects of my medications. My main struggle is with diarrhea. I used to have so much shame around it. Experiencing it at least twice a week. Currently, I access both Eastern and Western medicine to find some balance and live in the solution of a whole life lived. Tell me about your time in Miss Saigon. In 1989, I first saw Miss Saigon in London and fell in love with the show. I knew I had to be in that show. Performing
You are a big supporter of The Actor’s Fund. Tell me why that’s important to you. Here’s why. When I was in need, I received assistance with rent, medical bills, dental bills, lab bills, utilities, moving costs and security deposit, therapy payments and copayments, substance abuse treatment and rehabilitation, financial sssistance while awaiting approval of Social Security disability. They also helped me with psychotherapy referrals, hospital visits, home visits, counseling. referrals for community organizations (like God’s Love We Deliver). I participated in HIV support groups, utilized the Actors Fund Career Center, participated in the writers group, and was referred to new HIV Protease Inhibitor Clinical Trial for Crixivan. This was 1994, before the widespread availability of protease inhibitors and it saved my life as I was down to a T-cell count of 50. At that point in the AIDS crisis, the protease inhibitors were not readily available. Someone on the trial of this medication had passed away and I got his slot. I even mentioned this medication to a lifelong friend who eventually received the medication and is alive and well today. Need I say more? That’s why I never say “no” to The Actors Fund of America. HIVPLUSMAG.COM
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IF SOMEONE DOESN’T WANT TO WORK WITH ME, I DON’T WANT TO WORK WITH THEM. I NEED TO BE IN A SAFE ENVIRONMENT. Wow, that’s amazing! Let’s talk about all that you’ve done for them. In return I felt the need to show my gratitude. I am a member of the HIV/AIDS Initiative of The Actors Fund of America. I have been interviewed by them and also posed as a model in several of their advertisements. I spoke to dance majors about safer sex and my experience as a Broadway performer in a presentation on HIV prevention to college students at SUNY Purchase dance program. I testified in a video interview for Actors Fund to explain to donors why their help was so important. After a fundraising performance of Larry Kramer’s The Normal Heart, I participated on a panel on long-term survivors, answering questions from the audience. I was photographed and shared testimonial for The Actors Fund Annual Report; modeled for “A Long Running Show of Support,” a brochure for the AIDS Initiative; referred friends to the Actor’s Fund; shared with Actors Fund HIV/AIDS Initiative clients career opportunities for other HIV men; gave to testimonial to BC/EFA regarding all the ways, I was assisted by The Actors Fund. BC/EFA is the primary funder of The Actors Fund of America. In L.A., we’re constantly told coming out poz is the death knell for an actor. We can probably count the out HIV-positive actors in L.A. on one hand. Is it different in theater? I do feel that the theater community is much more progressive than the film industry. The founding of Broadway Cares/Equity Fights AIDS, The Actors Fund of America, and Broadway Bares all are great examples of how the theater community took care of its own. Because I experience the film industry as a bit more conservative, I did have a hard time when I was in the Los Angeles company of Miss Saigon. When I was first coming out about my HIV status, I heard a lot of negative talks. People would say, “If you come out, you will never work again.” Or, “It’s time to let go of your HIV status because you are doing better now and it’s only a minor part of who you are.”
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How do you feel about all that now? Well, I have worked through most of the shame for how I got the disease. I got HIV sexually because of bareback sex. In those days, if you didn’t get it from a blood transfusion then you were not considered an “innocent victim.” I am neither innocent nor a victim. My work throughout the years on guilt has helped me deal with judgments I had about opportunist infections, medications, and side effects. Quite frankly, if there is an entertainment professional that doesn’t want to work with me, which is good information to know, that means I don’t want to work with them. I need to be in a safe environment at work and in my life. Also, I’m glad I was open about my status. At one point in my career, I was at the final callback for a musical called Swing. I was doing a lift with a girl, and, she accidentally punched me in the nose. Well, the stage manager knew me and my HIV status and the situation was handled with dignity and respect. I’ve had an over 35-year career in entertainment, having worked as producer, director, writer, editor, photographer, casting director, actor, singer, dancer, commercial print model, choreographer, and talent scout. I believe that I am doing pretty well. I have learned to find the many gifts that AIDS has given me. Frank’s photo essay isn’t your first either. No. I am featured as a person with AIDS in a 2003 portrait in America and Other Work by Andres Serrano and Living Proof by Carolyn Jones … captures people from all backgrounds—children and grandmothers, men and women of every race—living with HIV and AIDS. Backstage Pass is a titillating photographic chronicle of Broadway Cares/ Equity Fights AIDS’s annual Broadway Bares event—it features sizzling behind-thescene photos, performance shots and stunning studio stills of men and women from the Broadway stage who have been a part of this spectacular burlesque event over the years, And Broadway Day and Night by Ken Marsoleis, Roger McFarlene, and Tom Viola, the ultimate insider’s look at the day-to-day work, the people and the crafts that create the most spectacular of entertainments: the Broadway show. And royalties for it are donated to Broadway Cares/Equity Fights AIDS. Which takes me back to your extensive fundraising work, going back to that 1989 Broadway Bares, which is a fun and legendary annual fundraiser for HIV. From 1991 until 1997, I did various fundraising events for Broadway Cares/Equity Fights AIDSs. I performed in the Easter Bonnet Competition, which featured performances and bonnets created by the company of Miss Saigon. Also, Gypsy of the Year, a showcase in which each Broadway company collaborated on a number to be judged by a panel. I stripped in Broadway Bares and honorably served on the creative team for several years. Also, I directed, Ribbons of the Heart, an AIDS benefit performed by the first national company of Miss Saigon in Detroit. You’ve done so much—what do you think of as some of your career successes? In my poem “Trigger,” I have a line: “With medals of courage, I surrender.” My “medals” are a great example of my activism. Some of them include: Commercial print model for The Actors Fund, photo essays as a person with AIDS, and HIV pharmaceutical ads; casting director for HIV talent, fundraiser for BC/EFA, AIDS Walk NYC, featured in HIV periodicals, poet of “Trigger,” S filmmaker of AboutFace, interviewee of “AIDS in the Workplace” on Cable Positive Television, and an appearance on the Montel Williams Show as a person with AIDS. My activism will continue when I am no longer here. I’m in the process of doing my will and figuring out how to donate my body to Mount Sinai School of Medicine for research. My dad was a pathologist and my brother went to medical school there, so, that would be my way of honoring them and helping further HIV research. Your list of co-morbidities are pretty vast. How do you stay positive and motivated in the face of health challenges? I stay positive by living in the solution and not the problem. My tool when something comes up health wise that is challenging is to turn it over to my higher power. I need to remember that this too shall pass. Staying sober, therapy, my creativity, playing softball and tennis, biking, taking floor barre, working out, taking classes at NYU and Manhattan Neighborhood Network, being of service. This is a good lead-in for another line from, “Trigger:” “I don’t die today, I choose to live!” l
TEZ ANDERSON This long-term survivor is still kicking ass. BY SAVAS A B A DS I D I S
T E R RY “ T E Z ” A N D E R S O N is an award winning, nationally recognized long-term
survivor activist, writer and speaker. Living with HIV since 1983, Anderson later founded and runs Let’s Kick ASS (AIDS Survivor Syndrome), the first and largest group in the world focused on improving the lives of those who’ve been living with HIV for decades and older adults aging with HIV. He served as a creative consultant on the award-winning Tales of the City miniseries that aired on PBS in 1994 and depicted life in San Francisco in 1976, but his connection to Tales—and their original author, Armistead Maupin—goes much deeper. The two men were a couple at the time and a major character in the series was based on Anderson. In 1990 the Maupin and Anderson were featured in People magazine as a serodiscordant couple—one of the first to speak publicly. “That was a big coming out in a mainstream publication,” Anderson recalls.
Tales of the City was also groundbreaking. “It was this highest-rated show on PBS up to that point,” Anderson says. “It was also controversial. Some stations in the South refused to air it. We showed America things they had not seen before, like two men kissing, nudity, and pot smoking on public television.” That contribution to LGBT visibility was critical to Anderson, a gay rights activist since “before it was LGBTQ,” he says, because “for decades my agenda was visibility.” It hadn’t always been that way. Although Anderson had been out as gay since the late 1970s, he was a self-described “bar bunny” who just wasn’t into “silly parades.” That is until 1983, when he went to his first gay Pride in the West Village. “As I got off the subway at Sheridan Square and saw all those queer people enjoying the sun and festivities, I started to cry,” Anderson remembers. “A few moments later I declared that I would become an activist.” And he did. But by the 1990s, living with AIDS and the grief over those lost was starting to take its toll on Anderson and his relationships. Today, as news swirls of a Tales revival (set in modern day San Francisco), Anderson says, “As proud as I am of that first Tales of the City miniseries, I am no longer associated with it. It was the fallout of my downward spiral at the worst of my AIDS survivor syndrome.” It took hearing about Iraq War vets suffering from post traumatic stress disorder for Anderson to realize, “I was in the troughs of complex posttraumatic stress from years planning to die and not planning to live. The big crisis point for me came when I began wrapping my brain around the idea that I was not dying from AIDS, but living with it. I remember thinking, ‘Oh damn you might be an old man with HIV.’ It was the one thing I had not imagined and that sent me into a tailspin of depression, anxiety, and panic.” Anderson says he alienated the people he cared most about, deepening his sense of isolation. “I fought the wrong things—my loved ones—and tried to deny, or run from, the enormity of that reality. The thing I would have done differently, that I still feel bad about, is not treat the people I loved the most so badly during [that time]. It was a long waking nightmare. I acted out and pushed away people I cared about.” Now 57 and living in San Francisco with his husband Mark Ruiz and their Labradoodle Riley, Anderson says even after all this time, there are former friends who still think of him as “an angry jerk.” It took realizing that he was suffering from the effects of trauma from all the illness, caretaking, and death while waiting to die before Anderson named the root of his problems: AIDS Survivor Syndrome. Doing so not only changed his life, but the lives of many other longterm survivors who saw their own grief and trauma in Anderson’s diagnosis. Anderson says strangers thank him “for explaining to them what is happening to them. It is the first step to recovery. It is not that they are crazy; it is a human response to an unprecedented, sustained trauma.” He believes AIDS Survivor Syndrome is “not as simple as PTSD, not just depression. It’s way more complicated HIVPLUSMAG.COM
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and it is my mission to educate people and come up with an intervention to help those suffering.” Before speaking at the International AIDS Conference in South Africa on the subject this summer he was “excited that I have an opportunity on a world stage to talk about this because it is real and devastating and I’m working on a groundbreaking intervention which I’m announcing soon.” He credits the success of the HIV Long-Term Survivors Awareness Day—which he helped initiate in 2014—with raising awareness about the needs of the 26 percent of people living with HIV who are long-term survivors. But he says there’s still a long way to go, not only in educating others about aging with HIV and surviving ASS, but in getting services and resources to people who will have long lives with HIV. “There are many, many things I’d do differently,” says the aging Baby Boomer. “Probably the biggest thing is open a retirement account. I think
one of the hardest things about being 57 years old and a long-term survivor is always being broke. If I could change one thing for the HIV longterm survivors I serve, I would lift them out of poverty. It contributes to [the] isolation, invisibility, and depression so many of us experience.” Like Anderson, too many of those who survived the early days of the epidemic didn’t plan as though they would. “One of the big things I would have done differently is not spend 25 years thinking, It doesn’t matter, I’ll be dead,” he admits. “Why make plans or set goals? It was living on short timeline which didn’t prepare me for being 57.” Issues related to HIV and aging will only increase over time, as the population living with HIV continues to age. As of 2015, Anderson says, over half of all people living with HIV in the U.S. are over age 50; by 2020, it will be 70 percent. “We need as sharp a focus on HIV and aging as we give to youth and prevention,” Anderson insists, and he’ll stop at nothing to get it. l
KENGI CARR Photographer goes from homeless to shooting red carpets. T H E R E C E S S I O N H I T Louis “Kengi” Carr particularly hard, and the Santa Monica, California, native quickly found himself on the streets of Los Angeles, where he remained homeless for 29 months (a full two and a half years). That was seven years ago and even though the recession officially ended in 2009, studies continue to suggest that most Americans are a single paycheck away from living on the streets themselves. In other words, it is surprisingly easy to fall into the spiral that leads to homelessness. Unfortunately, it’s a lot harder to return to stable housing. Learning he was HIV-positive while on the streets added another barrier to Carr’s own attempts to do so. “I think people would be surprised to know that homeless individuals with HIV have a much greater burden to remain or even make it into care,” Carr says. “Housing is the large obstacle, along with transportation—and, most likely, not having a cell phone. However, the amount [of ] stigma, disrespect, and discrimination homeless individuals face on a daily basis from the very places they must turn to for support are greater burdens and can make someone feel like there’s no hope for them. This sort of stigma, disrespect, and discrimination is also present within the ‘community,’ the very place someone with HIV is supposed to feel safe and supported. Homelessness trumps—for lack of a better word—HIV.” One thing that Carr never lost was the camera he carried with him while on the streets. Now Carr talks about his photography “saving” him. “I always joke that my camera is my therapist,” Carr explains. “During homelessness, to avoid tickets from the police for sleeping in public, I’d walk from downtown L.A. to Santa Monica taking pictures. It distracted me from
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being cold and many times very sick at night. Photography became my voice and it spoke much louder and reached much further than I could. My camera became my safe harbor.” In the years since, Carr’s photos have opened more doors than he would ever dreamed: he’s now a Getty Images contributor, a gallery curator, author of the photo book 29
KENGI CARR
BY JACO B A N D E R S O N - M I N S H A L L
HELGA ESTEB / SHUTTERSTOCK.COM
Months, and he shoots magazine covers, red carpet events, and celebrity portraits. “My camera is still my voice, my therapist, my safe harbor. It’s my HIV peer support. It centers me, relaxes me and reminds me to keep working and stay humble.” He does a good job of the latter. He admits, “Every time I have the opportunity to stand front and center on a red carpet I giggle.” Carr feels something similar about opening his own art gallery. “My gallery is located on the edge of downtown L.A. and South L.A. Each day, as I walk to and from the train I walk past places I use to sleep. Places I once begged for food. I walk past people I provide support for. I never imagined my life would be where it is today, but I have no regrets.” When Carr says, “people I provide for,” he means that literally: he’s actively involved in supporting others still on the street. He’s a little like the leader of a mountain climbing venture, pulling others along with him as he climbs toward the peak. Through his nonprofit Project KengiKat, he launched Do Something Saturday, where people gather toiletries and other supplies and deliver them to homeless people in their communities. But he doesn’t stop there. He also works with Being Alive L.A., which provides mental health and wellness services for people living with HIV. Carr says the group “will always hold a special place in my heart—they were my blessing in the storm.” He’s also involved with Reach LA, a youth-driven organization supporting black and Latino gay, bisexual, and transgender youth, and I-ACT, a powerhouse little non-profit that does amazing work in Africa, he says, and “every time I have the honor of working with or supporting them I walk away a much better human.” “Having these opportunities allows me to be a voice, a vessel if you will, to share my experiences and those of others who are homeless and living with HIV. They allow me to educate folks and introduce a new conversation on how to support people in need. My parents used to say, ‘You can’t help anyone you don’t care about or bother to speak to.’ I couldn’t agree with this more. Too many folks are talking about and saying they are advocating for homeless individuals, but when you ask tough question outside their script they don’t have any answers. Until we, as a nation, are willing to see and fully admit that the old ways of helping homeless people—especially here in Los Angeles— has not and is not working and until the old guard is removed and replaced with a humanity before profits, care with compassion, and a true respectful and human approach to ending homelessness as we know it, then we will never see an end to homeless.” He remains humble—responding to being on the Plus list by thanking us for, “considering someone like me for this amazing honor”—but admits he’s proud of Project KengiKat. “I started this small organization while homeless and today it is over nine years old with friends and supporters all over the globe. I’m so proud of my volunteers near and far who suit up and show up for folks in need without fail, expecting noting in return. I’m proud that Project KengiKat has ushered into my life a solid circle of amazing friends who not only embrace my vison, but truly love and support me unconditionally.” Carr hopes to continue growing the organization he founded, transforming it into “a community space that includes my Evolve Gallery, providing space and support for homeless individuals as well as my brothers and sisters living with HIV and AIDS. A place where I can further my goals of empowering people and connection without bureaucracy through art, photography, music, dance, and education.” When it opens, we’ll be standing in the line outside. l
CHANDI MOORE BY D I A N E A N D E R S O N - M I N S H A L L
E A R L I E R T H I S Y E A R when E! online published an article subtitled, “19 Times Chandi Moore Was the Real Star of I Am Cait,” it summed up—with cute GIFs, of course—why Moore has become a fan fave for thousands of TV viewers. Transgender, HIV-positive, and the co-founder of Trans Girls in Action Divas, Moore resonates in part because she’s sweet, smart, and brutally honest. Moore’s also been a visible proponent of her sometimes misguided co-star, Caitlyn Jenner, telling Huffington Post, “Her heart is in the right space and she is doing something that she did not have to do at all. I don’t feel that our community should hold her to a higher standard than anyone else that is freshly coming out.” A trans youth health and HIV prevention counselor and educator at Children’s Hospital of Los Angeles, Moore also stars in the Centers for Disease Control and Prevention’s new HIV testing and prevention campaign, “Doing It.”
\What that people really love about you on I Am Cait is that you talk about the difficulties you’ve had in your life. Is that something that you share with the kids that you work with? I definitely share that with the kids that I work with because trans women of color are not only more likely to contract HIV, but they’re HIVPLUSMAG.COM
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SOCIETY HAS THEIR IDEA OF WHAT A TRANS PERSON LOOKS LIKE ANYWAY. ALL OF US DO NOT LOOK LIKE MISS AMERICA. more likely to be murdered as well. Promoting being tested and being comfortable with yourself is something that is very near and dear to my heart. My heart goes out to all those people in Orlando. I just hope that the good thing that comes out of this, not that any of it is good, is that our community can unite, and not separate. We need to come together.. Has being on TV given you a bigger platform for talking about issues? Yeah, it definitely has. Being a part of I Am Cait has changed my life in so many ways. It’s a lot different for me now, like going to the grocery store. You get recognized now. It was one thing to be popular in our LGBT community, but it’s different when you go outside of your community and you have people coming up to you and saying, “You know what? Thank you for being a part of that show. Something you said really changed my way of thinking.” I’ll never forget, I met a parent and her daughter did not share with her that she wanted to transition, and she was kind of hurt by that. I had to say, “Well, you know what, sweetie? She didn’t feel comfortable with you enough to share that experience with you.” She shared it with someone else. But now they watch I Am Cait together. They’ve really grown from that experience. The rates of HIV and violence against trans women are outrageous. How do you live your life without being fearful? That’s great question for you to ask me because I never felt fear for my life in all these years until that Sunday of the Orlando tragedy. We actually had gay Pride here [in L.A.] and we were in the parade. I hadn’t heard about the tragedy until I actually got to the parade. Then to find out that they caught somebody that was on their way to the parade [in LA, with weapons] really scared me. For the first time, I felt really nervous about living. I’ve never felt that way. I’m always encouraging the youth to be themselves and don’t be afraid to come outside and live your life and do all these things. In that moment, I, too, was scared. But we all have to get beyond our fears. We have to push through and keep going…. We have to continue to fight our way through it. That’s what I’m going to do.
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What does it mean for you to do HIV outreach to kids now? I enjoy doing outreach. We have a group called B3, which is for HIV-positive youth, and we also have LIFE, which is for gay, straight, bi, trans youth in between the ages of 12 and 24. [I’m] able to get out there and have those one-on-one conversations with them, passing out condoms … PrEP is something that we’re definitely encouraging our youth to look into right now. I like seeing the smiles on [the kids’] faces, when we can get them to smile, because a lot of the youth that we deal with are homeless. Sometimes they’re not having a good day, and … you kind of have to meet people where they stand. That’s why I’m such a big hugger of everybody that I come in contact with. Because you never know what that hug will do, how that will change someone’s momentum in their day. What do you tell them that you wish somebody would’ve told you at 12? I wish we would’ve had all these type of services available when I was 12! I wish that there were support groups available when I was 12. Encouraging, positive words is … what I try to tell them to keep them motivated; that they can be whatever it is they choose to be in life. LGBTQ youth suicide is a big issue as well. I actually had to deal with two clients one day, in the same day, threatening suicide. I was kind of like an emotional wreck really, because I didn’t know how to react to them. But still, I’m glad that they called me because I had to remind them how amazing they were, and how great of an asset to the community that they were. Luckily, by the grace of God, both of them made it through. It’s just challenging when you’re living your life, or trying to find yourself and you realize that you’re different. Especially with our youth not having parents who embrace them in most cases. It just makes life difficult when you’re thrown out on the street, thrown out to the wolves, set up, basically, to contract HIV, because you have to survive out there on those streets. Survival sex is very prevalent in our community. It’s very challenging trying to keep yourself motivated to be your authentic self when you live in a society that judges you. Not every trans person can afford hormones or access to healthcare. It is great now that Medi-Cal is actually helping the girls, and guys, with some of those services now. Some of them are able to have their [gender reassignment surgeries] done through Medi-Cal. [That] really helped a lot of the trans and gender nonconforming people be more comfortable with themselves. They’re able to get that great self-esteem that they need to be able to go out there and get that job. There’s nothing like being able to walk in your authentic light. At our hospital we’re able to meet parents with children as young as 3. I have to embrace the parents because so many parents out there don’t embrace their children—so for them to be actually at a hospital, looking into their child being different, and trying to figure that all out … it’s so amazing. That’s what keeps me inspired. The new parents that are embracing the youth these days. How does access to hormones tie in with trans people’s HIV risk? Well, having access to hormones allows the youth to be more assertive in the choices that they make. Because they don’t feel as if they can’t be who they want to be. When they’re not making those choices themselves, that’s what puts them at risk for HIV. But once they’re able to get their medical services, that keeps their minds going. Now that they can go get their surgeries done…it makes life that much better for them, and it keeps that risk down, when they have access to things. Having access to hormones allows to people to not need to resort to sex work. That’s something that I wish would’ve been available, because I dealt with the black market when I started my transition. Having medical services available to me at that time would’ve been great because it would’ve helped me be able to explain to my parents what I was going through. Because I didn’t know. What’s your message to people? If you’re going to play, play safe. When you play, don’t be afraid to walk in that door and get a test. Knowing your status is so important. I said it in the video. I’m going to say it again right now. It’s more valid for you to know your status than for you not to know. Don’t be afraid to go get tested. There’s cool people in those clinics, like me, who are willing to give you all the information you need, provide you with condoms, lube, whatever you need. Answer any questions. Just don’t be afraid to ask someone. That’ll be my message. l
JEFFREY NEWMAN BY SAVAS A B A DS I D I S
PHOTO CREDIT
“ T H I N K I N G B AC K , I N some weird way, it’s probably the most intimate relation-
ship I’ve ever had,” Jeffrey Newman says, of living with HIV. “It’s incredibly personal, on multiple levels.” HIV has been part of Newman’s life since day one of adulthood, making his belief that “we are a sum of our parts, and our experiences” particularly true when it comes to HIV. Newman first got involved in HIV activism during his freshman year at New York University in 1985, just when AIDS was really hitting hard. “It was surreal,” he recalls. The college freshman was living in New York City’s Greenwich Village, which, he says, “aside from San Francisco, was the heaviest hit city for people dying from AIDS [complications]. There was a bizarre campaign that started at the time, where everyone wore safety pins in their shirts to show they practiced safe sex.” To the young student activist, groups like ACT UP seemed vaguely distant and “primarily made up of older gay men, who were literally watching all their friends die.” Newman only knew two people who had HIV. One was a high school buddy. The other was a friend of a friend. A few years later, things changed “pretty drastically,” and the disease finally hit home for Newman, when one of his best friends suddenly died from AIDS complications. “No one knew he had AIDS,” Newman remembers. “He just left town one day, which we later found out was to go back home to Rochester and die.” It affected Newman profoundly, and set him on the path to becoming an activist. Newman’s grief deepened when his first love passed away. Newman was 25, his partner 23 years old. The next three years felt like a blur, with one death after another. “I lost another best friend, a dozen close friends, and countless acquaintances. My life suddenly became this giant red ribbon. I wore the pin. My checks had a red ribbon on them. I went to vigils. I volunteered my ass off, and sat on committees and boards of as many organizations as I could. I even chaired the AIDS Walk in Miami, with Rosie O’Donnell and Cindy Crawford as my grand marshals.” In May, 2001, Newman’s boyfriend tested positive. Newman followed protocol and got tested too. He was shocked when his test came back positive and he took it pretty hard. Despite 14 years of being an activist, Newman suddenly realized he actually knew very little of what it meant to be a person living with HIV. “It’s like, I thought I knew everything, and quickly found out I knew nothing. Suddenly all these words like antiretroviral and viral load and T-cells, which I had heard about, were ones I needed to know—and fast. There’s a huge difference when you’re on the outside, and you look at people with the virus as ‘one of them,’ versus when you suddenly become ‘one of them’ and realize it’s not an easy club to join, but when you do, it’s a whole different world.” Someone once asked Newman, if he could write a letter to HIV, what would he say. He simply replied, “Hello.” Not one for wallowing in self pity or negativity, Newman has never seen his status as something to be ashamed of, or to hide from. “I’ve never given it that kind of power over me. I’ve also never allowed myself to be defined [by] it.” Still, he admits, as an advocate, the dialogue, and the script, suddenly changed. Where before he could only sympathize, now he could empathize. “I suddenly had the ability to speak about my own journey,” Newman explains. “And use it to inspire others to live positively with HIV.” Newman says he feels kind of blessed that HIV happened when it did for him. “I wasn’t a long term survivor in the sense that I lived through the AZT years and the early days of AIDS as a person with HIV. I didn’t have that baggage. But I also wasn’t someone in their 20s coming into this in 2016, during the PrEP years. I feel like this happened to me at a time when I wasn’t so jaded as to live in a place of anger and despair, but I was affected by it enough, for so long, that I saw how much of a difference I could make by using my story as a means to help others.” That’s what propelled him to become more visible, coming out to the world on social media in 2011. He says things took off once he started focusing on curbing HIV ignorance and proving it got better for people living with HIV, just as it does for LGBT youth.
“It’s something I’m enormously proud of,” Newman admits. In 2013, when he decided to launch his own blog-meets-inspiration-campaign on PositivelyJeffrey.com, and on social media, including a Facebook page called “HIV and AIDS. Get The Facts. Curb The Ignorance. Proving It Gets Better.” “I was inspired to use the tag line, ‘More than just a status,’ meaning that being positive is more than just a status—it’s a state of mind, and of being. It’s not only about being HIV-positive. It’s about living life in a positive way.” Newman may now be better known as Positively Jeffrey, but he’s also a respected communications consultant and an award-winning journalist. He played a crucial role in developing the online presence of Out magazine, where he served as president and CEO of Out.com [Editor’s note: Out is owned by our parent company Here Media.] Newman, who lives in New York City, with his partner of 12 years, says amazing things have happened to him as a result of Positively Jeffrey and being so open and public about his status. “People from all over the world have been moved or inspired by how I live my life,” he explains. “I got an email at Christmas time from a kid in his early 20s, living in a small, Midwestern city, who had just tested positive, and was being shunned by his family and friends. What came from that was this beautiful friendship. And it’s not just people living with HIV, but all kinds of people—gay and straight, old and young.” One mother wrote that she shared Newman’s story with her teenage daughter, who was inspired to turn it into a school project; another shared his journey with her 13-year-old son, who’s living with a disability. She wanted to show him that just because you are different or are living with something that others aren’t, you can do it in a positive way and not allow it to define you. How beautiful is that?” l HIVPLUSMAG.COM
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KERRY THOMAS Being imprisoned on HIV criminalization charges hasn’t kept this Idahoan from becoming a vocal activist. BY JACO B A N D E R S O N - M I N S H A L L
K E R RY T H O M A S I S serving a 30-year-sentence for allegedly failing to disclose his positive status to a sexual partner, but he hasn’t let his incarceration stop him from becoming one of the most visible anti-criminalization activists. Thomas sits on the board of the Sero Project, a nonprofit organization fighting for freedom from HIV stigma and injustice, especially criminalization. Sero Project leaders like Sean Strub credit Thomas with helping to bring awareness to HIV criminalization. Thomas has addressed attendees at the two HIV is Not a Crime conferences (via phone), allowed his image to be used in anti-criminalization campaign posters, served as a source for Turn It Up! Staying Strong Inside (Sero’s resource guide for those incarcerated and living with HIV or hepatitis), and has spoken with the media numerous times. Sero recruited Thomas in keeping with their mission to give those most impacted by these laws a seat at the table. Thomas experiences the intersections inherent in being an HIV-positive black Muslim man living in a low population/low incidence state—who has been prosecuted, convicted, and now incarcerated. Thomas is the most recent person sentenced under Idaho’s HIV disclosure laws, but he was also the first. Initially convicted in the late 1980s, Thomas traces his current activism to his lack of it in his 20s.
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“I think I should have been more vocal,” he reflects. “I could have done a better job of speaking out for myself in 1988 when I was first diagnosed. At the time I believed that if I kept my head down, don’t make waves, everything would be alright. Then I came face to face with HIV criminalization and my illusion of anonymity was literally stripped away. I was branded a threat to society.” He was eventually paroled, but that conviction has haunted his life, and impacted his current sentence (the judge gave him the max because of his record). “I believe I must do something, anything, to prevent this from happening to someone else’s son, father, friend. [So], every morning, around five o’clock, I swing my feet off my bunk, stand up and get moving.” Sero says Thomas helps keep the group “institutionally grounded in the realities of living with HIV. It is always sobering to hear his voice on the phone or to read his letters or email.” Thomas says he is honored to be working with “motivated, get-out-of-bed-and-work-hard people.” At one of his first board meetings, Thomas says, “I realized that everyone on the call was HIV-positive. I actually had to put my phone on mute for a moment to regain my emotional composure.” Although his initial appeal was recently denied, Thomas remains remarkably positive. He publically shares his appreciation for the Idaho correctional administration—which has allowed him to continue his activism outside, with Sero, and inside the prison, as a peer educator. Along with Black and Pink, a national prison outreach group, and a few other inmates, Thomas is helping develop a “peer advocacy group focusing on resources men can use once we are released from prison. Housing, employment, medical care—encouragement and hope.” He finds parallels with work he did volunteering at Allies Linked for the Prevention of HIV & AIDS, in Boise. “Young people would come in seeking answers,” he recalls. “It is similar in this prison community. Medical care is outsourced to a private for-profit company and as a result education and preventative care has taken a back seat. Not to mention the stigma in prison of having conversations regarding sex, STDs, infections from needles. I don’t have all the answers but I’m fortunate to have resources in the community.... And together we’ve been able develop an effective network of resources.” One of the hardest parts of being incarcerated is how it disrupts relationships with those outside. “How do I keep my family together?” the father and proud grandfather muses. “Man it is hard. Next to impossible. Maintaining family relationships is not an institutional priority. So I am blessed to have people in my life, namely my wife, son, and daughter-in-law, that at times work harder than I do to keep in contact. It is important to me that my family knows I love them, care about them—to know that I hear them, and that I am doing everything I can to get home. ” Looking into the future, Thomas is adamant, “the senseless singling out and defining people by their HIV staus has to end. And I’m willing to do my part to see that happens.” l
TEO DRAKE
SARIT ROGERS/SARITPHOTOGRAPHY.COM
BY JACO B A N D E R S O N - M I N S H A L L
A R E C E N T S T U DY from University of California Los Angeles’s Williams Institute suggests that transgender people represent a much larger portion of the American population than previously thought. According to the new data, 0.6 percent, or 1.4 million Americans identify as transgender. Transgender women, in particular, have been hard hit by HIV with nearly a third of trans women in the U.S. living with the virus (over half for African-American trans women). Trans men are often forgotten about, but a survey of HIV-positive trans people by Transgender Law Center’s Positively Trans program indicated that 12 percent of respondents were men living with HIV. “Frankly,” says Teo Drake, who sits on the board of Positively Trans and has been HIV-positive for over two decades, “most people don’t think that HIV-positive trans men exist at all. The dual stigma of being a trans man and having HIV—particularly trans men who identify as gay and/or have sex with men—means that it’s easier to allow people to make assumptions than to have to also disclose being trans.” Drake, the Buddhist co-founder of Transforming Hearts Collective, is one of the few HIV-positive trans men who’ve gone public with their status to draw attention to the fact that trans men do get HIV. “One of the major factors for me in deciding to become more visible was that I fear that trans men make up a growing demographic of HIV-positive people... because there’s virtually no targeted HIV-prevention information for this demographic. And that deeply worries me.” Choosing to disclose his HIV status and embrace the trans label held particular challenges for Drake, because “I’ve never seen ‘trans’ as central to my identity and I’ve previously not been very public about my gender history. I identify as a queer man with a history of gender transition.” Still, Drake committed to the cause in part because “as a white person who is disabled, my race affords me a level of protection compared to many other folks. I also didn’t have to worry about losing my job, as many people do. But mostly [I joined Positively Trans] because I know that people need to put a face to an experience for it to be understood as real.” But he’s also clear that his experience isn’t universal. “I don’t speak for other HIV-positive trans guys,” he says. Although California’s Office of AIDS recently presented data indicating that transgender men have the lowest levels of viral suppression among all HIV-positive residents, Drake cautions against extrapolating that data to mean trans men have worse health outcomes than trans women. “Social determinants of health like housing, policing, incarceration, and interpersonal violence,” put HIV-positive trans women, particularly women of color, at greater risks,” he says. “That said, I can certainly hazard a guess that stigma and disparities in access to health insurance, as well as feeling unwelcomed by HIV-related support services, contribute to negative health outcomes among HIV-positive trans men. I can [personally] attest to the number of agencies that weren’t prepared for me to walk through the doors, leaving me feeling unwelcomed and unseen, at best.” Many trans people report outright discrimination, harassment, and ignorance are barriers to health care. “Add being HIV-positive,” Drake says, “and that increases the risk of having a negative experience in a health care setting.” As “someone who lives in a rural area, I learned the hard way that I can’t show up at my local hospital and disclose that I’m trans and expect that interaction to go well.” Drake would like more service providers to understand, “you can’t look at my HIV disease without understanding my life history and current context.
You can’t treat my HIV without also understanding what pressures I live under, what impacts my ability to stay in care, and what is most important for me that helps me stay alive. I’m very clear that if I had to choose between testosterone and my HIV meds I would choose testosterone every time.” That’s because Drake credits his gender transition with keeping him alive. “The whole reason I began to get well 14 years ago, after years of living with AIDS and having a T-cell count of 33, is because I finally started to like who I was and I finally wanted to live.” Although his T-cells have long since rebounded, Drake says, “When people say we shouldn’t use the word AIDS anymore, that we’re all just HIV-positive, it invisiblizes so much of the resilience and the honoring of where I’ve come from. AIDS isn’t a place of shame or a historical artifact for me, it’s a symbol of my defiance and my resilience.” He also feels that becoming a Buddhist and yoga practitioner played a significant role in his recovery. “I wouldn’t be alive today if I hadn’t found a spiritual practice that taught me how to come home to my body in loving ways, that supported me in navigating discomfort, and that helped me to center compassion for myself and for others at the core of who I am.” His experiences living with the disease for over two decades, Drake says are “definitely woven into the work that I do to support movement building around anti-oppression and anti-racism…. It particularly informs the work I do with queer and trans folks, drawing on the skills that my spiritual practices have taught me around self-care and communal care as being keys to our collective survival.” Drake writes on these subjects in the anthology, Yoga and Body Image and at the blog RootsGrowTheTree.com. He serves on the board of Phallacies, which employs innovative educational theater in leadership development, health education, and violence prevention for men. Drake’s also on the faculty and board of Off the Mat, Into the World, an organization that sees yoga as a tool for change. “It’s a practice that helps a person cultivate self-awareness and learn to move through discomfort and pain. And in the face of injustice, it can sustain us in our efforts for personal, cultural, and global transformation.” l HIVPLUSMAG.COM
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KARI HARTEL BY JACO B A N D E R S O N - M I N S H A L L
W H E N K A R I H A RT E L’ S 9 -year-old daughter Liana garnered her first speaking engagement at Rise Up!, an annual Denver, Colorado, event, Hartel knew she was up to the challenge. Liana, who has known her mom is living with HIV since she was still a toddler, was ready to take the stage at an event for National Native HIV/AIDS Awareness Day and Women and Girls HIV/AIDS Awareness Day alongside performers like Kiawitl Xochitl and April Chavez. “When we sat down to figure out what she was going to say,” Hartel recalls, “her first response was, ‘I think HIV is great.’ After I picked my jaw back up and said, ‘I don’t think you can say that,’ she said, ‘Mom, I love you and it doesn’t matter to me that you have HIV. It could happen to anyone and we get to do and see some of the most amazing things because you tell people that you are living with HIV. So I think it’s great.’” Hartel says she couldn’t really argue with that. “So it was what went into her speech. She then finished it off by saying, ‘Do you know that some of the people I love the most in this world are all living with HIV?’” The proud single mom says she’s “raising an amazing daughter who will go on to change hearts and minds about so many of the social justice issues that she is already so passionate about.” Her daughter is just one of the people “who challenge me to do better and be my best self.” Besides being a mother, 35-year-old Hartel is also one of the anti-criminalization activists that scored the biggest win of the year. While many states have criminalized HIV by requiring disclosure of a positive status prior to sexual contact, Colorado used HIV as a sentencing enhancement to certain charges if the defendant is HIV-positive. For example, charges for sex work or solicitation of a sex worker were bumped from a misdemeanor to a felony if the person arrested knew they were HIV-positive. Recognizing that these laws add to HIV-stigma, penalize those who know their status (thus reducing the incentive to get tested), are often used to criminalize transgender women, and disproportionately impact people of color, Hartel’s group has been trying to overturn or modernize them. The Mod Squad, as they became known, are a group of HIV-positive women in Colorado (including Barb Cardell—67 of our list of 75 Most Amazing HIV-Positive People of 2016—and Penny DeNoble pictured above with Hartel, L-R). They have spent years researching, wording, introducing, and lobbying to eliminated felony charges for sex work and modernized language in the Colorado’s health code regarding sexually transmitted infections. In June their work paid off. The bill passed the state legislature and was signed by the governor, making Colorado only the second state in the U.S. to update their HIV criminal statutes. “Persistence pays off !” Hartel says. She believes the key to legal reform is, “A core group of advocates, activists and allies who are passionate about changing the laws...
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Everything else is details and will be worked out as you move along, as long as you have a solid core. That being said, it takes persistence, time, and dedication coupled with a little luck. This was certainly not a sprint. It took us four years to get this accomplished.” Hartel’s fellow activists continue to sing her praises. “I really saw Kari soar as an advocate and activist,” Cardell says. “She and I drafted the legislation and she ensured that pregnant women, youth, and sex workers were never left behind. She spent many nights after her daughter went to bed on the phone, revising and redrafting legislation. Her testimony in support of the bill—and especially the need for minors to have safe access to prevention services—was fierce. She took on several conservative Republicans in committee hearings. She not only held her own with them, but in some instances [unmasked] their ill-conceived and privilege-based beliefs that … [all kids] have caring parents and don’t need access to medical care without parental notifications.” A founding chair of Positive Women’s Network USA Colorado, Hartel remembers testifying at a state Board of Health hearing, demanding community involvement in decisions impacting HIV care, testing, and treatment. They not only got it, the action “was the beginning of a great working relationship with the department,” Hartel says. “We often raise a ruckus. When there is an issue that needs attention, we hold a ruckus—stand on street corners with signs, write letters, and show up to speak with elected officials.” At one such meeting, she says, another attendee leaned over as she and her fellow activists walked into the room and said, “’Uh oh, they’ve got their shirts on. Somebody is gonna get their ass kicked!’ To me that is an amazing honor. It shows [PWN USA Colorado] is a player and a game changer.” When not raising a ruckus, Hartel works as a client advocate and retention specialist at a family-centered comprehensive HIV clinic, and has worked with hundreds of people over the last seven years, especially women and kids, working with those clients “so that they can find their own voice and take their own seat at those tables.” It’s that kind of approach that leads Cardell to gush, “She is a game changer with an activist’s heart and a policy wonk’s mind. She speaks truth to power every day, in every meeting. This might not make her the most popular community representative but she is certainly one of the most honest. People always know where they stand with Kari and she will always tell you, in great detail, the strengths and weaknesses of a program or a policy.” Most of all, Cardell says, Hartel is “an incredible mother raising a fabulous daughter who is an advocate and activist at 9 years old.” “I made the decision when my daughter, Liana, was about 2 that I was going to be open about my status,” Hartel explains. It wasn’t a simple decision. She worried about how being open and public could impact Liana even though she is HIV-negative. “I knew that I was prepared for people’s ignorance, but I worried that she might pay for it.… In the end I decided that I would be open and honest about my status but only disclose in social setting when there is a purpose. When we’re at her school or hanging around the neighborhood, there is really no need to disclose…. But, if they find out, they find out. I refuse to live in shame and silence.” l
TODD HEYWOOD BY SAVAS A B A DS I D I S
W H A T H A P P E N S W H E N one of the country’s leading investigative journalists—who educates people on breaking down the stigma HIV-positive people face in society—finds himself the victim not only of a horrendous crime, but of a criminal justice system that often blames the victim? Todd Heywood found out the hard way. Heywood has made a career out of breaking down stigma, uncovering injustice, and seeking to overturn discriminatory laws. As a journalist who has written for numerous publications, including the American Independent News Network, Between the Lines, Pridesource.com, and Lansing City Pulse, Heywood broke stories about white nationalism, oil spills, and labor violations, in addition to covering HIV and the LGBT community. In addition, Heywood has been one of the country’s few HIV-positive elected officials, the communications director for Michigan Equality, an educator, and a theater actor. Earlier this year, Heywood appeared in Simon Stephens’ Motortown, with Michael Boxleitner, son of actors Melissa Gilbert and Bruce Boxleitner. (In character, Heywood is pictured with Boxleitner above.) His lectures are extremely popular on the university circuit in his home state of Michigan. Grace Wojcik of Oakland University says “It has been my pleasure to host Todd on-campus for various lectures including ‘Viral Apartheid: The Rise of HIV Exceptionalism,’ and ‘Raw Deal: Barebacking in America.’ To this day, my students still rave about Todd’s lectures.” Marilyn Preston, of Grand Valley State University similarly raves about Heywood, who she invites to speak to her students about HIV policy, criminalization, and stigma. “His discussions always lead to a change in attitude and increased knowledge for my students,” Preston says. “[He] makes strong connections with my students, getting them to think more critically about the ways in which homophobia, transphobia, politics, and sociological changes impact their own lives—and how they too can make a difference in terms of advocating for, and supporting, those with HIV.” The award winning journalist also excels at weaving his personal experiences into a story without making it seem all about him. In his 2014 reporting on the overturning of Michigan’s same-sex marriage ban, Heywood recalled how he had found a gold band in the Christmas gifts his former partner never had a chance to give
him; his partner died of AIDS complications in 1996. Heywood concluded: “Tomorrow, 18 years too late, I can finally visit David’s grave and say ‘Yes. I will marry you.’” Recently Heywood became part of a news story in a way he would never have imagined after he was brutally attacked in his own home. Heywood had invited two men—who he’d met via Craigslist—to come to his house for sex. Instead, they forced him to lie face down, handcuffed his hands behind his back, and began to beat him mercilessly. “This is how I’m going to die,” Heywood would later remember thinking. The two men then ransacked his apartment, stealing everything of value: including all of Heywood’s work-related equipment and his television. Pushed into the kitchen and ordered to get on his knees, Heywood feared the worst. Instead, he was momentarily left alone and was able to make his escape, hands still cuffed behind his back. After the men were gone, he realized they had also stolen thousands of dollars-worth of HIV medications. Unlike some victims, Heywood was determined to report the assault and press charges. Two days after the attack, Heywood says he met with a Detective Johnson from the Lansing, Michigan Police Department for a victim interview and to look at photo line ups. As they talked, Heywood shared that his medication had been stolen. “Did they know?” The detective interrupted. As someone who has reported on HIV criminalization, Heywood was aware that this kind of question can be far from innocent or innocuous. Failing to disclose one’s HIV status prior to sex can be a crime. Heywood believes Detective Johnson was attempting to determine whether Heywood, the victim of a brutal attack, had also committed a crime.
Heywood had disclosed, and says, “I told him that. Had I not done so, it’s possible that I myself could have faced prosecution. That disclosure could have cut the other way, as well. The defense could have made my HIV the justification for the attack.” A week after their assault on Heywood, the men involved reportedly admitted to investigators that they deliberately targeted “fucking faggots on Craigslist,” because gay men were “sick” and “would not report it to the police.” Heywood had not been their first victim, but he was determined to be their last. “At the end of the day,” he says, “just like with prevention—protecting yourself is a key starting point. That means being aware of who you are meeting, where you are meeting them, and what is going on around you.” The former politician says we can’t stop there. “It also means engaging in the political process,” he says. “That means talking to candidates. It means talking to activists. It means talking to local lawmakers about how laws need to change to help prevent and punish hate crimes and lessen stigma. As a culture, we also have an obligation to call out all forms of oppression when we see it. Whether that’s in person or on social media. Social shaming is a powerful and important tool that can help deter some anti-gay bigots and challenge stigma.” Having already covered his own hate-motivated assault, Heywood adds, “The story will also, obviously, become part of the conversations that I have about the downside of Michigan’s HIV criminalization law.” In June, the two assailants—charged with assault, unlawful imprisonment, and robbery— accepted a plea deal and were sentenced to 17 to 55 years in prison. l HIVPLUSMAG.COM
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DENA HUGHES BY SAVAS A B A DS I D I S
E A R L I E R T H I S Y E A R , when Dena Hughes learned she’d been chosen as a Houston Gay Pride marshall, she told Out Smart magazine she felt a little like Sally Field at the Oscars. Honored that Houston’s LGBT wanted to recognize her as an ally, she couldn’t help but think of Field’s 1985 Oscar acceptance speech: “You like me. You really like me!” Not that this was the first time her contributions have been recognized. Back in the spring of 2011, Hughes was invited to the White House, where she was named a “Champion of Change,” and spent the day with some of the country’s leading HIV/AIDS experts and policy makers. Upon returning to Houston, she got a hero’s welcome, complete with the mayor declaring it “Dena Gray Day.” Hughes met her husband Daniel in 2012 on an online dating site for people living with HIV. Now their blended, seven-children family live next door to the house she grew up in (where her mother and step-father still live). Hughes, who’s been HIV-positive since 1991 says at first she was stunned by the diagnosis because “I knew [HIV] affected gay men, and that wasn’t me. I knew it affected intravenous drug users, and that wasn’t me. There was no conversation in the black female community about AIDS, so the whole subject was rather remote to me.” Hughes still isn’t a gay man or intravenous drug user, but these days she sees their issues intertwined with her own. She’s created an extended network of friends and colleagues including a mix of people living with HIV, LGBT folks, church friends, and of course, her extended chosen family. In 1999, with HIV spreading like wildfire among African American communities in the South, Hughes, as chair of Houston’s HIV Prevention Planning Group, joined others calling for the kind of mobilization rarely seen without a hurricane or other natural disaster. Remarkably, public officials listened. The Houston City Council and representatives of the Harris County and Texas state governments declared HIV a state of emergency in the African-American community. More than just a public awareness proclamation, the declaration opened the way for government funds to be diverted to HIV prevention efforts. A state of emergency task force was created and under the leadership of Hughes (who served as the chair for several years) and others, it rolled out HIV prevention campaigns focusing on HIV education, testing, and treatment among African-Americans. Their “It’s Real” campaign garnered national attention and featured everyday people—both positive and HIV-negative. The task force had a lasting impact, in part by sparking the creation of other task forces, focused on Houston’s Latino, women, and youth communities. Hughes went on to serve as Director of Advocacy for the People With AIDS Coalition, where she oversaw Project LEAP (Learning, Empowerment, Advocacy and Participation), a program that helped people participate in
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and gain decision-making positions on the Ryan White Planning Council, the Community Planning Group, and nonprofit organizations that provide HIV services. Project LEAP, which still exists today, trained a new generation of leaders addressing HIV issues. In 2000, the Houston Chronicle included Hughes among the “new faces of AIDS,” and she parlayed that publicity to further increase HIV literacy by conducting workshops, presentations, and trainings on HIV and HIV prevention. She spoke locally and traveled across the country to visit churches, college campuses, and businesses. Since then Hughes has worked for the City of Houston Department of Health and Community Services, with a two-year break to serve as the executive director for Bread of Life, an organization serving the homeless. She continues to see how other people’s needs intersect with those of the HIV-positive community—and to expand her family: she says, “I am so grateful for the love and support of my amazing family, both my biological and my HIV and LGBT family. We are a crazy tribe. I couldn’t have developed into me without them.” The feeling is mutual, say fans like Fiona Dawson—director of the documentary film Transgender, at War and in Love, and a leader in the (recently successful) fight to lift the military ban on transgender service men and women. The two activists worked together at Houston’s nonprofit HIV service provider, Bering Omega. Dawson credits Hughes with “changing the narrative” about HIV and “decreasing stigma of the disease by pulling various intersections of humanity—LGBT, people of color, women, socio-economic, etcetera— together to be empowered through the narrative of HIV.” l
ANDRENA INGRAM BY E L A I N E M E N D U S
R E V E R E N D A N D R E N A I N G R A M is a fighter. She’s faced down abuse, addiction, and HIV with resilience and tenacity. Even today, the long-term survivor is glib about the latest: her recent heart surgeries, from which she’s still recovering. That won’t stop her, of course; little does. That’s because, Ingram says, she overcomes it all with a little help from God. Ingram’s relationship with religion has been a complicated one. Raised Baptist in Jamaica, Queens, Ingram struggled as a child to understand a God who didn’t seem to hear her prayers. She grew up in a house headed by an abusive, alcoholic father and says now, “Growing up, I never got Jesus or God. I was so mad at the both of them. I was raised in the Baptist tradition, and can clearly recall to this day, the picture of the blonde, blue-eyed Jesus, looking down on me from the wall in Sunday school, with myself asking him in my head, ‘Why were these things happening to me? What was wrong with our family? Why did Daddy act like that? What did I do?’” Going to church just didn’t resonate. “Jesus offered no comfort for me, and why in heaven’s name was he holding that sheep? I wished he held me as protectively!” Ingram continued to struggle with these feelings through high school and she quickly fled home after graduation. She joined the Army, where she says she tried to hide from the past, but wasn’t able to. Instead, she ended up surrounded by drugs and alcohol. She married, got divorced, and experienced bouts of homelessness. Ingram married again, lost her second husband to complications from AIDS, and was back on the streets when she learned she was also HIV-positive. Everything changed in a South Bronx church where Ingram says she finally found a spiritual home. She recalls hearing the passage from Luke 13:11: “And behold, there was a woman who had had a disabling spirit for eighteen years. She was bent over and could not fully straighten herself.” “I immediately recognized that woman as myself,”
MY CONGREGATION EMBRACES ME, AND EVERYONE ELSE, FOR WHO THEY ARE, AND NOT WHAT THEY ARE LIVING WITH.
Ingram explains. “And I turned myself over to God.” Soon, Ingram kicked addiction, studied theology, and become a minister. With a Masters of Divinity degree from the Lutheran Theological Seminary, Ingram has been pastor of Philadelphia’s St. Michael’s Lutheran Church for the past four years. She’s also an active blogger, and frequently speaks at public engagements to raise awareness of HIV. She recently addressed a crowd of 33,000 youth in New Orleans, Louisiana. “Living with HIV for over 28 years has had its ups and downs,” she admits. “But I thank God that I have been able to tolerate medications as they came. I participated in trials [and] took whatever I could back then. I have been undetectable for more years than I can remember. I have a great doctor and organization that cares for me.” Reverend Ingram’s congregation has known about her HIV status from day one and they’ve stood by her. “My congregation embraces me, and everyone else, for who they are, and not what they are living with.” Ingram uses her pulpit to increase HIV awareness and prevention. “We partner with an organization and do testing for the community,” she explains. “And provide resources for the community to protect themselves.” As an older woman who has been living with HIV for nearly three decades, Ingram says she is acutely aware of the issues that face long-term survivors, including invisibility. “There are a lot of us long-term survivors out here, who are feeling pushed aside, and not cared for,” she acknowledges. “We seem to be the forgotten ones.” Adding that those who’ve been living with HIV for a long time face different health issues, Ingram says. “We have no idea what medications are doing to our organs.” Through her ministry, Ingram is happy to be able to help other long-term survivors, who “need people to walk with them…. we find each other and support one another.” l HIVPLUSMAG.COM
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BY SAVAS A B A DS I D I S
“ I H AV E H A D women suggest that because I am bisexual, I spread HIV,” Khafre
Kujichagulia Abif, told Plus magazine last year. The 49-year-old bisexual man is an Atlanta-based AIDS activist, author, and the editor of Cornbread, Fish and Collard Greens: Prayers, Poems & Affirmations for People Living With HIV/AIDS. The father of two is married to a woman but—despite the dual stigmas—has been open about his bisexuality and HIV status with his partners. “There is no disconnect between who I say I am and what I do sexually,” he said in 2015. “Not enough people have open and honest discussions about HIV and sexuality. Far too many people have sexual partners with whom they have never had a conversation about HIV, STIs, and their own sexuality.” But Abif does admit he didn’t always disclose his status in professional situations. He’s the founding executive director of Cycle for Freedom, a 2012 ride from the Gulf of Mexico to Canada, retracing the 2,028-mile Underground Railroad to draw attention to the impact of HIV on African-Americans. Abif has served on HIV Prevention Community Planning Groups in Pennsylvania, New Jersey, and Georgia. As a librarian Abif was the first recipient of the Black Caucus of the American Library Association Dr. John C. Tyson Emerging Leader Award. His writing is featured in numerous anthologies (including the Handbook of Black Librarianship) and on TheBody.com. “For many years my advocacy was done in confidential settings—[like] Ryan White Planning Council [and] State HIV Prevention Community Planning groups,” Abif says now. “My efforts made a difference in in lives of PLHIV, however my active open voice through writing and
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TIM DANIELS
KAHFRE ABIF
speaking without fear has had a greater impact. Perhaps I should have stepped out of the shadows of shame and stigma much earlier. If I had, my personal legacy and contribution to the fight to end HIV may have been even more significant.” Although he was diagnosed with HIV in 1991, Abif also didn’t tell his mother that he was positive until five years later. She hugged him, she prayed, and she cooked—the cornbread, fish, and collard greens referenced in his anthology’s title. “She wanted to fatten me up, I guess.” Abif jokes. Last year, Abif founded Ubuntu Press which plans a series of anthologies (collecting short fiction, poetry, creative nonfiction, personal narratives, critical essays, and visual art) from black, trans, and HIV-positive voices beginning with Sistah’s Speak: Voices of HIV-Positive Women. “This project seeks to create a space for women to share their stories in their own voice,” Abif explains. “Sharing with an opens heart as a vehicle for chronicling your lives. The goal of this project is to empower, support the soul, and uplift the spirit of women living with HIV/AIDS.” Sistah’s Speak has an expected released date in October, it will be followed by Raising Kazembe: A Memoir, a collection of journal entries written by an HIV-positive father to his son. It’s a fitting book for Abif to publish, as his HIV advocacy has often focused on the needs of children, youth, and families—particularly black families. Disturbed by the increasing HIV infection rates among gay and bisexual youth, Abif argues that several factors are to blame. “Young people are self-identifying with their sexual orientation much earlier and it is resulting in them being thrown away by their families and [their] church.” These discarded young people are left to fend for themselves on the streets, without high school diplomas or, Abif says, a “skill set for gainful employment, [or] the skill to negotiate healthy sexual relationships.” He also blames cities that aren’t addressing homelessness, especially among youth. And “by and large, the very systems [and] organizations which were created to combat the rise of HIV continue to fail black gay and bisexual men; and our youth are suffering a greater burden as a result.” Solving the complex problem will take greater accountability from HIV service organizations and coordinated efforts on the part of numerous agencies. Abif says we also need to “address the stigma which fuels the very idea that the lives of black gay and bisexual men and youth have no value. We must confront the internalized shame and negative self-thought of black gay and bisexual men and youth—which have many believing their life is not worth saving.” Abif believes America needs to confront our reticence to providing comprehensive sex education in middle and high schools; and give young people the ability to access health care without the permission of their parents. “And,” he adds, “the black community needs to have a ‘new thought’ with regards to how the collective community must rally to combat these numbers and how we neglect and throw away black gay and bisexual youth; with the black church leading the way.” l
CARRIE FOOTE BY D I A N E A N D E R S O N - M I N S H A L L
CA R R I E F O OT E U N D E R STA N D S
young love. At 17, the New York City native and high school dropout was homeless and hooked on heroin. Then she lost the only thing good in her life: Danny, her 29-year-old boyfriend of nearly two years, who died of endocarditis and lung failure related to injection drug use. Rather than pushing her to quit drugs, his death led her to double down in grief. Her father talked her into a three-month rehab program. He lied; it was actually a year. It saved her life—and gave her a purpose. It was at the Colorado rehab program where she first tested positive for HIV. The year was 1988. Foote overcame her addiction, earned a GED, and eventually pursued a PhD in sociology and adopted her now 12-year-old son Sami from a Jordanian orphanage. She’s been a professor of sociology at Indiana University–Purdue University, Indianapolis for the past 14 years. More importantly, the woman who went from addiction to the classroom (and was cured of hep C along the way), says she’s “essentially turned my HIV diagnosis into my life’s work….” Her contributions are numerous. She chairs the HIV Modernization Movement Indiana, is an active member of the International AIDS Society, Women’s HIV Research Initiative (Well Project), Sociologists’ AIDS Network, Positive Women’s Network-USA, the Sero Project, and the International Rectal Microbicides Advocates. She teaches a course on the social drivers of the HIV epidemic, organizes a team for the Indiana
AIDS Walk, and is a board member of Brothers United, an HIV prevention and support services organization serving predominantly black communities, LGBT or gender nonconforming. Foote’s most recent research project is a collaboration with the Centers for Disease Control and Prevention and the Indiana State Department of Health that gives voices to people who inject drugs, many who are HIV-positive, in Austin, Indiana—the epicenter of the largest HIV outbreak among injection drugs users in the U.S. in nearly two decades. The findings, she says, “will be used to better understand their experiences to improve services for them and their community, as well as to advocate for increased access to syringe exchange programs and medicated assisted treatment in other parts of the U.S. dealing with the challenge of opioid addictions.” Things have changed greatly since she learned she was poz, but one area hasn’t kept up with science: the law. “Nowhere is HIV stigma more damaging and harmful then when it is structurally sanctioned in social policies and laws,” the professor insists, “as that gives people the legal right to stigmatize and discriminate against people living with HIV. Numerous people living with HIV around the world have been terribly harmed by these laws and it pains me to see such blatant injustices.” Foote argues that HIV stigma remains “one of the biggest barriers to ending this epidemic—it is a barrier to testing, access, and linkage to care, whether or not one starts HIV medications and is able to adhere and achieve an undetectable viral load, along with barriers to supportive relationships, sexual and reproductive wellbeing, as well as other meaningful experiences in life.”
She should know: Indiana has among the worst HIV criminalization laws in the U.S. “We are a state where someone can be prosecuted, or experience sentence enhancement, solely because they are HIV-positive and nothing else.” Now 46, Foote is spearheading the effort to modernize Indiana’s HIV laws, while also managing the PLHIV and Memoir Project, “a living archive of sorts that aims to pull together in one place, any [and] all HIV-related memoirs or biographies ... including those written by people deeply affected by HIV pandemic….” She hopes to ensure that the histories of people living with HIV, including the tragedies and triumphs, are kept alive and documented. Her students say her greatest contributions are closer to home. “Dr. Carrie has been such an inspiration to me,” says John W. Coberg II, a student who took Foote’s “AIDS in Society” course. “Her unmatchable passion for the rights of PLHIV, dissipation of the stigma around the virus and genuine willingness to educate everyone she can, certainly makes her an amazing HIV-positive person.” When she talks to classes, “their mouths just drop when they learn someone with a PhD, who looks like I do now, is HIV-positive and was once homeless, a high school dropout, and injected drugs. When I see that all the work I do actually makes a difference … that is when I smile, shed a tear of joy, and say to myself, ‘All the hard work is worth it. I must carry on as there is still more to be done!’” Still, her biggest accomplishment may be more personal: bringing her “amazing son” Sami into her life. “I faced several hurdles to becoming a mom, something I wanted more than ever to be. It was the one time I faced blatant discrimination due to my HIV status.” For a decade, her HIV status made delivering an HIV-negative child was impossible. By the time that changed, they discovered her now-exhusband was infertile. After borrowing money and going into debt, they decided to pay the high cost for in-vitro fertilization. But the fertility clinic staff, other than the doctor, did not want to provide care because she had HIV. “It was the one time in my life where I felt completely powerless over what I saw as ‘my right, my body, my choice.’ No one had the right to decide for me whether I could have a child. That was my decision to make. But I was powerless.” A medical ethics review board ordered the clinic to provide her care, but the in-vitro failed. So Foote turned to international adoption. “Adopting with HIV at that time was also no easy task due to folks with HIV being discriminated against in that arena as well back then, but we managed to overcome those obstacles and did it!” l HIVPLUSMAG.COM
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TREATMENT
BETTER LIVING THROUGH (LESS) VETERANS CAN CHEMISTRY NOW GET THE HEP C Is Atripla as eff ective at lower doses? New research says yes. TREATMENT THEY NEED
FLICKR/TOMAS LIUBERTAS
NEW RESEARCH PRESENTED at the After American outsourcing treatment last recent Society for Microbiology conference good news: when HIVyear, the off VAered increases funding positive were undetectable to coverpeople morewho veterans living switched their dose of Atripla from every with hepatitis C. day to every other weekday, they were able to maintain viral suppression. This is great news for users, as Atripla comes with prevalent side effects including insomnia, unusual dreams, loss of bone density, and kidney function impairment. Fixed dose pills have made HIV treatment convenient, but reducing the frequency could lower costs, fight pill fatigue, and reduce harmful side effects. In fact, those on the reduced frequency showed better bone density and kidney function than daily users. However, cholesterol levels were higher, likely because reducing tenofovir reduces the drug’s cholesterol-lowering effect. Fears that a non-daily pill regimen might make it harder for people to remember to take them consistently proved unfounded. According to AIDSmap, adherence was good. Adherence was assessed by both patient questionnaires and pill counts. Researchers Esteban Martinez and Jose Gatell of the University of Barcelona will continue running the study for a full three years to verify that the less frequent dosage of Atripla can be used for long-term treatment. — SAVAS A B A DS I D I S
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BOOSTER SEAT A potential HIV vaccine gets a helping hand.
GEONOTYPE: FLICKR/DANIEL GIFFNEY; VACCINE/SHUTTERSTOCK
NEW HEP C DRUG FIRST TO TREAT ALL GENOTYPES THE FEDERAL FOOD AND DRUG ADMINISTRATION has approved Gilead’s new hepatitis C medication, Epclusa, the first pill to treat all major forms of HCV. While a series of new drugs have reshaped treatment of the liver-destroying virus, they’ve been limited to single strains of the virus. For example, Gilead’s Harvoni is only approved to treat HCV genotype 1. Sure, that’s the most common type of hep C, but that treatment wouldn’t work for everyone. On the hand, Epculsa—a combo of 400 mg. of sofosbuvir and 100 mg. of velpatasvir—will. Another advantage is that unlike other hep C treatments like Copegus and Harvoni, Epculsa doesn’t include ribavirin, an antiviral ingredient that’s poorly tolerated by some users and can come with a long list of unpleasant side effects, including abnormal breakdown of red blood cells that can lead to a heart attack. The FDA approved Epculsa for people with or without liver damage. The new drug’s broad application and lower price tag—it’s cheaper than Harvoni and Sovaldi, but not Zepatier—could make it easier to use than the other hepatitis drugs recently approved, which are each tailored to different viral strains or stages of liver disease. With 53 million worldwide living with HCV, there is a huge market for a drug like Epculsa. As long as liver disease remains the leading cause of non-AIDSrelated deaths among people with HIV, that market will also include many living with both HIV and hep C.— SA
A P OT E N T I A L H I V vaccine is headed back to clinical trials to see if it can work even better by adding non-infectious, virus-like particles to a person’s immune system, particles that then help recognize and repel HIV if the person is later exposed to it. GeoVax Labs, Inc. filed an Investigational New Drug Application with the U.S. Food and Drug Administration for the HIV vaccine and clinical trials (dubbed HVTN 114), conducted by the National Institute of Allergy and Infectious Diseases, begin this fall. The new trial follows an earlier phase two trial (HVTN 205) for GeoVax’s GOV-B11 vaccine, and it will test whether adding a booster later would increase the vaccine’s antibody responses, thus making it more effective at defending against HIV. The boosting agent will be the GeoVax MVA62B vaccine with or without a gp120 protein vaccine. In earlier studies, gp120 has been shown to increase the bond between the body’s immune response antibodies and HIV-1 antigens, which could increase the efficiency of the virus-fighting antibodies. “HVTN 114 represents the first clinical study of the effect of late boosts,” said GeoVax’s chief scientific officer, Harriet L. Robinson. “The protein boost, AIDSVAX B/E, is the same protein used to boost immune responses in the partially successful RV144 trial in Thailand.” That Thailand trial was the first vaccine trial to show promise. GeoVax also recently received a $294,038 grant to continue research on a vaccine developed specifically for the needs of Sub-Saharan Africans, who are the most impacted by the ongoing HIV epidemic. (To sign up for the trials, visit the HIV Vaccine Trials Network, which conducts most of the HIV vaccine trials worldwide, at HVTN.org.) —ELAINE R. MENDUS
HIVPLUSMAG.COM
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D A I LY D O S E
B Y S U S A N R YA N - V O L L M A R
MANAGING THESE GOLDEN YEARS T H A N KS TO S I G N I F I C A N T improvements in treatment, people living with HIV can expect to enjoy a normal lifespan. As a result, half of those living with HIV in the United States today are over the age of 50. Despite the advances in treatment, older adults living with HIV can face unique health challenges related to their long-term use of antiretroviral medications, as well as experiences of HIV-related stigma and discrimination. The National Center for Innovation in HIV Care at The Fenway Institute recently published Strategies to Improve the Health of Older Adults Living with HIV, a policy brief for healthcare and service providers on ways they can help clients and patients address some of the challenges of aging. Sean Cahill, PhD, director of health policy research at The Fenway Institute at Fenway Health and one of the authors of the report, helps us unpack it.
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FLICKR/BRADY WILLIAMS
STEP ONE IS A “BROWN BAG” REVIEW WITH YOUR DOC.
WHAT ARE SOME OF THE HEALTH CHALLENGES FACED BY OLDER ADULTS LIVING WITH HIV?
chronic inflammation in the brain that is driven by HIV.
First, their ability to metabolize antiretroviral medications can diminish over time. When this happens, they may be at greater risk for some of the side effects of these medications. Those who are taking medicine for other health conditions might also experience adverse interactions between those drugs such as liver toxicity.
WHAT ELSE SHOULD PROVIDERS BE AWARE OF WHEN CARING FOR OLDER ADULTS WITH HIV?
WHAT SHOULD DOCTORS DO IF THIS IS HAPPENING?
Adjusting medications may be necessary to minimize side effects and unhealthy interactions between drugs being taken for different health conditions. One side effect of some antiretroviral medications is reduced bone density. So, providers who are caring for men over age 50 and postmenopausal women with HIV should be monitoring bone density and considering alternative antiretroviral medications in order to minimize the risk of bone fractures.
They need to know that there are much higher rates of depression among older men and women who are living with HIV. They are at a greater risk for substance use ranging from tobacco, alcohol, and marijuana, to cocaine, opioids, and other prescription drugs. They’re also more likely to be lonely or socially isolated, especially if they are older gay or bisexual men or transgender women, so providers should be screening for these conditions and offering referrals to services. IF YOU WERE TO PICK ONE THING TO BE DONE TO IMPROVE THE HEALTH AND HAPPINESS OF OLDER ADULTS LIVING WITH HIV, WHAT WOULD IT BE?
That’s easy: increase their opportunities to make new friends and meet others living with
WHEN PEOPLE CONNECT AND BECOME LESS ISOLATED, IT CAN EASE DEPRESSION AND HELP THEM STICK WITH THEIR TREATMENT PLAN. WHAT CAN PEOPLE WITH HIV DO TO HELP THEMSELVES?
One simple thing we recommend is what’s called a “brown bag” review. At each doctor’s visit, a patient should put all of the prescription medications, over-the-counter medications, vitamins, and herbal supplements he or she is taking into a brown bag and review these medications with their doctor to identify any potential negative interactions. ARE THERE ANY OTHER HEALTH RISKS FACED BY OLDER ADULTS LIVING WITH HIV?
They might find their cognitive abilities are declining at an earlier age than the general population. Some research suggests antiretroviral therapy may increase the risk of Alzheimer’s disease. WHY IS THAT?
We’re not entirely sure, but some hypothesize that people who have been on antiretroviral treatment for a long time might experience
HIV. Facilitate discussions around dating and being sexually active while living with HIV, medication adherence, dealing with stigma, and navigating insurance issues. Many people with HIV are getting hit with unfair insurance copayments for their medications. By hosting regular group activities at your healthcare organization or service site, you can provide helpful information to clients and also create a welcoming space where they can connect with others who are facing similar difficulties. When people connect and become less isolated, it can ease depression and help them stick with their treatment plan. It can lead to a powerful cascade of positive reinforcement for healthy behavior.
Strategies to Improve the Health of Older Adults Living with HIV is a policy brief by The National Center for Innovation in HIV Care at The Fenway Institute. It can be read online at http://bit.ly/mproveldrpozhealth. HIVPLUSMAG.COM
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HATE IS A PUBLIC HEALTH EMERGENCY WHAT’S BEHIND ORLANDO-STYLE VIOLENCE? AN OUTBREAK OF HATE.
48 | SEP TEMBER / OCTOBER 2016
ing to disease, murder, and suicide; a result of hate both internal and external to oneself. This is unacceptable. WHAT SHOULD WE DO AS MEDICAL AND PUBLIC HEALTH PROFESSIONALS TO RESPOND TO THIS EMERGENCY?
Most in the public health community know that ensuring good health is about more than promoting good behaviors. It requires supporting policy and structural changes to an inequitable social, political and economic system that results in gun violence and persistent health inequities. But how do we address hate? As a start, with intention and without fear we must acknowledge that these “isms” and phobias are a public health threat, just as real as a gun, a virus, or a bomb. Systems cannot wait to change organically. They must be pushed to change. This will require commitment over the long term. At the New York Public Health Department, a helpful start to the process has been offering trainings and dialogue to unearth unconscious assumptions and prejudices found in all of us. We must also confront the root causes of health inequities that are oppressive and prevent people of color and the LGBTQI community from achieving their optimal health. This means advocating for policies that prevent gun violence, creating and sustaining jobs, ensuring affordable housing, and opposing gentrification. We must value and engage the knowledge and self-determination of communities of color and queer communities, to develop solutions. This will foster mutual support and healing that is ongoing, consistent, and systematic rather than episodic and reactionary at the time of a crisis. Public health and common sense dictate that imminent threats are not nursed with the hope that they will extinguish by neglect. Public health emergencies—and hate is a public health emergency—require aggressive and decisive action. Orlando is a wake-up call, an opportunity to say “never again,” not only to obvious acts of violence like the Pulse Nightclub massacre, but to the more subtle but equally lethal acts of violence fueled by everyday, systemic hate. — D R S . A L E T H A M AY B A N K & D E M E T R E DAS KA L A K I S
Dr. Aletha Maybank is deputy commissioner and Dr. Demetre Daskalakis is assistant commissioner at the New York City Dept. of Health and Mental Hygiene. Maybank is also director of the Center for Health Equity. Daskalakis, a self-described “health warrior,” is the host of the Plus talk show, The T with Dr. D.
AP/MIC SMITH
T H E M ASSAC R E O F 49 people at a gay nightclub in Orlando in June was the latest manifestation of violence as a public health emergency. According to the World Health Organization, a public health emergency is “an occurrence or imminent threat of an illness or health condition, caused by … an epidemic … or ... highly fatal infectious agent … that poses a substantial risk of a significant number of human facilities….” Violence is the “epidemic” and the “health condition” is disability, death, and trauma to families and neighborhoods. So then what is the infectious agent? It is hate. And in the wake of this man-made disaster, we are left in the debris and horror of incalculable hatred. Therefore, hate must be considered a public health emergency. It manifests itself as racism, homophobia, religious discrimination, sexism, ageism, and a whole host of other injustices. Hate is not a feeling without consequence. Hatred causes deadly harm, with or without a gun. Hate enables us to judge people on who they love, how they express their gender, or the color of their skin. This creates barriers to health and wellbeing that are as violent as the damage done by a gun, knife, or bomb. It can lead to a quick death—such as from gun violence—or a chronic, slow, festering death that seeps the health out of our communities. Hate can be expressed through policy and can evolve into hard-to-see structural biases. We see it expressed in the ban on blood donation for gay and bisexual men and transgender women, and in barriers to equal restroom access to for transgender people. These policies are a reflection of oppressive systems, that regularly ignore, insult, and stigmatize LGBTQI, black, and Latino communities. All of this makes queers and communities of color vulnerable of dying too early from higher rates of diabetes, hypertension, infant mortality, HIV, suicide, and other dire mental and physical illnesses. For example, the average life expectancy of a transgender woman of color is 35 years. These lives have been cut short as a result of attacks to transgender women’s mental, emotional, spiritual, and physical wellbeing lead-
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