Plus 147 March April 2022 by Equal Pride

LONG-TERM SURVIVORS SHARE THEIR WISDOM BECAUSE YOU’RE MORE THAN YOUR STATUS

SAN FRANCISCO AIDS FOUNDATION’S FIRST BLACK CEO

TYLER TERMEER ON FAMILY, SUCCESS, AND MAKING HISTORY

MARCH/APRIL 2022 hivplusmag.com

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IMPORTANT FACTS FOR BIKTARVY®

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

(bik-TAR-vee)

MOST IMPORTANT INFORMATION ABOUT BIKTARVY

POSSIBLE SIDE EFFECTS OF BIKTARVY

BIKTARVY may cause serious side effects, including:

BIKTARVY may cause serious side effects, including:  Those in the “Most Important Information About BIKTARVY” section.  Changes in your immune system. Your immune system may get stronger and begin to fight infections that may have been hidden in your body. Tell your healthcare provider if you have any new symptoms after you start taking BIKTARVY.  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 BIKTARVY.  Too much lactic acid in your blood (lactic acidosis), which is a serious but rare medical emergency that can lead to death. Tell your healthcare provider right away if you get these symptoms: weakness or being more tired than usual, unusual muscle pain, being short of breath or fast breathing, stomach pain with nausea and vomiting, cold or blue hands and feet, feel dizzy or lightheaded, or a fast or abnormal heartbeat.  Severe liver problems, which in rare cases can lead to death. Tell your healthcare provider right away if you get these symptoms: skin or the white part of your eyes turns yellow, dark “tea-colored” urine, light-colored stools, loss of appetite for several days or longer, nausea, or stomach-area pain.  The most common side effects of BIKTARVY in clinical studies were diarrhea (6%), nausea (6%), and headache (5%).

 Worsening of hepatitis B (HBV) infection. Your

healthcare provider will test you for HBV. If you have both HIV-1 and HBV, your HBV may suddenly get worse if you stop taking BIKTARVY. Do not stop taking BIKTARVY without first talking to your healthcare provider, as they will need to check your health regularly for several months, and may give you HBV medicine.

ABOUT BIKTARVY BIKTARVY is a complete, 1-pill, once-a-day prescription medicine used to treat HIV-1 in adults and children who weigh at least 55 pounds. It can either be used in people who 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. BIKTARVY does not cure HIV-1 or AIDS. HIV-1 is the virus that causes AIDS. Do NOT take BIKTARVY if you also take a medicine that contains:  dofetilide  rifampin  any other medicines to treat HIV-1

BEFORE TAKING BIKTARVY Tell your healthcare provider if you:  Have or have had any kidney or liver problems,

including hepatitis infection.  Have any other health problems.  Are pregnant or plan to become pregnant. It is not known if BIKTARVY can harm your unborn baby. Tell your healthcare provider if you become pregnant while taking BIKTARVY.  Are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed. HIV-1 can be passed to the baby in breast milk. Tell your healthcare provider about all the medicines you take:  Keep a list that includes all prescription and over-the-

counter medicines, antacids, laxatives, vitamins, and herbal supplements, and show it to your healthcare provider and pharmacist.

 BIKTARVY and other medicines may affect each other.

Ask your healthcare provider and pharmacist about medicines that interact with BIKTARVY, and ask if it is safe to take BIKTARVY with all your other medicines.

These are not all the possible side effects of BIKTARVY. Tell your healthcare provider right away if you have any new symptoms while taking BIKTARVY. 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. Your healthcare provider will need to do tests to monitor your health before and during treatment with BIKTARVY.

HOW TO TAKE BIKTARVY Take BIKTARVY 1 time each day with or without food.

GET MORE INFORMATION  This is only a brief summary of important information

about BIKTARVY. Talk to your healthcare provider or pharmacist to learn more.

 Go to BIKTARVY.com or call 1-800-GILEAD-5  If you need help paying for your medicine,

visit BIKTARVY.com for program information.

BIKTARVY, the BIKTARVY Logo, GILEAD, the GILEAD Logo, GSI, and KEEP ASPIRING are trademarks of Gilead Sciences, Inc., or its related companies. Version date: February 2021 © 2022 Gilead Sciences, Inc. All rights reserved. US-BVYC-0008 01/22

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#1 PRESCRIBED

HIV TREATMENT * *Source: IQVIA NPA Weekly, 04/19/2019 through 05/28/2021.

DIMITRI LIVING WITH HIV SINCE 2018 REAL BIKTARVY PATIENT

KEEP ASPIRING.

Because HIV doesn’t change who you are. BIKTARVY® is a complete, 1-pill, once-a-day prescription medicine used to treat HIV-1 in certain adults. BIKTARVY does not cure HIV-1 or AIDS.

Ask your healthcare provider if BIKTARVY is right for you. ONE SMALL PILL, ONCE A DAY Pill shown not actual size (15 mm x 8 mm) | Featured patient compensated by Gilead.

Please see Important Facts about BIKTARVY, including important warnings, on the previous page and visit BIKTARVY.com.

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CONTENTS

ISSUE

147

ON THE COVER

30 GOLDEN GATE Doors open as Tyler TerMeer becomes the first Black, HIV+ leader of San Francisco AIDS Foundation.

FEATURES 18

AGE IS JUST A NUMBER Long-term survivors share their stories and wisdom.

24 LONGTIME COMPANION The OG of HIV orgs, GMHC creates a new hub for longterm survivors. 28 SITTING AT THE TABLE Filmmaker Steed Taylor documents the lives of his fellow long-timers in a moving new film. 38 WHEN CAGED BIRDS SANG How shady ladies of the silver screen and Women Behind Bars raised money in the early days of the AIDS crisis.

ON THE COVER & ABOVE Dr. Tyler TerMeer, photos courtesy of San Francisco AIDS Foundation

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CONTENTS TREATMENT 6

CUTTING FOR A CURE Could the “genetic scissors” of CRISPR lead to a belated HIV cure?

FOOD 4 THOUGHT Healthy eating is important for everyone, but especially those with HIV.

HOT SHOT A new injectable long-acting PrEP makes prevention even easier.

BUZZWORTHY 10

BIG ANNOUNCEMENTS Instagram becomes a platform for coming out and living one’s truth.

STI TESTING COMES HOME California now requires health insurance to cover at-home STI tests.

HIT THE ROAD A new resource helps folks living with HIV to travel safely.

FLIPPING THE SCRIPT Queer men in the U.K. no longer lead in number of new HIV cases. Who does?

THE LONG FAREWELL The passing of an HIV warrior.

VIVA PEDRO! Reflecting on the enduring legacy of The Real World’s Pedro Zamora.

DAILY DOSE

KEN PROBST ( 15); COU RTESY K ATHY B EN N E T T ( 1 6); COU RTESY B RIAN MCCOMAK (4 8)

FEMALE EMPOWERMENT Men aren’t the only long-term survivors. Hear one woman’s story of living with HIV for over three decades.

WELLNESS

46 THE GRATITUDE ATTITUDE Studies show being grateful can improve your mental health. But how do you make gratitude part of your daily ritual?

PARTING SHOT

48 HOSTILE WORKPLACE Here’s how to handle bosses and coworkers who are clueless (or antagonistic) when it comes to those living with HIV.

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chief executive officer & executive editorial director DIANE ANDERSON-MINSHALL editorial director, print NEAL BROVERMAN

executive vice president, publishing director JOE VALENTINO

editor in chief DESIRÉE GUERRERO

vice president, brand partnerships & sales STUART BROCKINGTON

EDITORIAL editors at large TYLER CURRY, ALEX COOPER senior copy editor TRUDY RING contributing editors KHAFRE ABIF, MARK S. KING mental health editor GARY MCCLAIN staff writers MEY RUDE, RACHEL SHATTO contributing writers ASHLEY INNES, ANDRE JACKSON, MATTHEW RETTENMUND ART executive creative director RAINE BASCOS PRINT PRODUCTION production director JOHN LEWIS production editors JD GLASS, DONALD PADGETT PRIDE MEDIA EDITORIAL editorial director, digital MIKELLE STREET editor in chief, the advocate TRACY E. GILCHRIST editor at large, the advocate JOHN CASEY editor in chief, out DANIEL REYNOLDS creative director, out BEN WARD digital director, out.com RAFFY ERMAC editor in chief, out traveler JACOB ANDERSON-MINSHALL digital director, pride TAYLOR HENDERSON director of podcasts & special projects JEFFREY MASTERS ADVERTISING & BRAND PARTNERSHIPS vice president, ad operations STEWART NACHT manager, ad operations TIFFANY KESDEN managing director, brand partnerships JAMIE TREDWELL creative director, brand partnerships MICHAEL LOMBARDO senior manager, brand partnerships TIM SNOW junior manager, advertising & brand partnerships REEMA THARANI associate manager, brand partnerships ANNA CARIAS coordinator, brand partnerships JOSE CARDENAS DIGITAL vice president, technology & development ERIC BUI social media manager CHRISTINE LINNELL social media editor JAVY RODRIGUEZ CIRCULATION director of circulation ARGUS GALINDO FINANCE/ACCOUNTING vice president, finance BETSY SKIDMORE accounts receivable controller LORELIE YU accounting manager PAULETTE KADIMYAN OPERATIONS director of human resources DRU FORBES chief of staff DUSTINA HAASE-LANIER ADVERTISING & SUBSCRIPTIONS Phone (212) 242-8100 • Advertising Fax (212) 242-8338 Subscriptions Fax (212) 242-8338 EDITORIAL Phone (310) 806-4288 • Fax (310) 806-4268 • Email editor@HIVPlusMag.com

FREE BULK SUBSCRIPTIONS FOR YOUR OFFICE OR GROUP Any organization, community-based group, pharmacy, physicians’ office, support group, or other agency can request bulk copies for free distribution at your office, meeting, or facility. To subscribe, visit HIVPlusMag.com/signup There is a 10-copy minimum. FREE DIGITAL SUBSCRIPTIONS Plus magazine is 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 subscribe, visit HIVPlusMag.com/signup NEED SUBSCRIPTION HELP? If you have any questions or problems with your bulk or individual magazine delivery, please email our circulation department at Argus.Galindo@pridemedia.com Plus (ISSN 1522-3086) is published bimonthly by Pride Publishing Inc. Plus is a registered trademark of Pride Publishing Inc. Entire contents ©2022 by Pride Publishing Inc. All rights reserved. Printed in the U.S.A.

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COU RTESY DESIRÉE GU ERRERO

by desirée guerrero

W H E N I H E A R the term “long-term survivor,” I am often thrust back into the memories of my youth in the 1980s and ’90s. Rather than bring to mind those who have survived all these years, it makes me think of two fabulous “guncles,” or gay uncles: mine and my childhood best friend’s, both lost to HIVrelated complications back in those early days of the epidemic. Sadly, these were the only two people I personally knew who had lived with HIV in the pre-antiretroviral era. And they are both gone. I can’t help but think of them when discussing long-term survivors because I always imagine what could have been — especially in the case of my own uncle, who died just a year before today’s highly-effective antiretroviral treatments were released to the public. However, in the hustle and bustle of our everyday lives, we sometimes tend to forget that many people living with HIV since the onset of the epidemic are still alive today. We forget that there are still thousands living in this country who have survived and thrived since those dark and difficult days. In fact, over half of folks living with HIV in the U.S. today are age 50 or over, many of them many of them living with HIV for decades. So, it’s about time we start prioritizing their needs.

editor’s letter

Despite the physical trials and tribulations — including severe side effects from pre-ART meds, diabetes, osteoporosis, frailty, and some cancers — that can affect older people living with HIV, the most common challenges facing them are mental. Just about everyone we spoke with in this issue cited isolation and depression as their biggest challenges. Dr. Tyler TerMeer, the new CEO of San Francisco AIDS Foundation, hopes to address many of these issues as the new leader of the 40-year-old organization (see his story on page 30). As the first Black man and only the second person living with HIV to helm SFAF, TerMeer says he hopes to bring a fresh perspective and energy to the respected organization. “We need to figure out ways to continue to be responsive and supportive of a community that is aging with their virus,” he says. The importance of peer support in the LTS community is not lost on artist, musician, and HIV activist Jesús Guillén. He founded an HIV LTS support group on Facebook in 2016, which now has over 5,000 active members. As a longterm survivor himself — who has suffered with neuropathy, cancer, and PTSD over the years — Guillén knows all too well what others have been through. Head to page 18 to read some of the support group’s stories of living with HIV. As long-term survivors begin to age into their senior years, it’s also important to document their stories so they’re not forgotten. This is why artist, activist, and filmmaker Steed Taylor was inspired to make a short film focusing on long-term survivors (page 28). The result is a powerful film that will leave you inspired and moved. Meanwhile, writer Ashley Innes recounts a conversation she had with a female LTS, Kathy Bennett (page 16), which reminds us that HIV survivors come in all genders. There are many people living with HIV today who haven’t been through the trauma that most long-term survivors have. For those diagnosed after effective treatment became available, HIV is no longer a death sentence, but rather a manageable chronic condition much like diabetes. But they share a common enemy that’s still quite debilitating: stigma. That’s why it’s so important when folks like Emmy-winning journalist and news anchor Lionel Moïse decide to open up about their journeys living with HIV (page 10). Ultimately, as we continue to care for and support those newly diagnosed, we must also never forget the soldiers in the fight who came before us. Peace & Blessings, desirée guerrero editor in chief

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T R E AT M E N T

CUTTING A PATH TO THE CURE PROMISING NEW PRECLINICAL DATA SHOWS THAT THE WAY TO CURING HIV MAY POTENTIALLY COME DOWN TO GIVING THE VIRUS THE CHOP — AT THE DNA LEVEL. BY RACHEL SHATTO

SH UT TERSTOCK

E X AV I R T H E R A P E U T I C S , a biotechnology company dedicated to eliminating HIV and other viral infections, recently released the results of a groundbreaking and promising preclinical study that highlights what may be the next step to curing HIV: literally cutting the virus from an individual’s DNA where it has incorporated itself into the genome. This “excision” is accomplished through the use of lipid nanoparticledelivered CRISPR-Cas9. For those unfamiliar with this technology, CRISPRCas9 is effectively a biological “machine” that allows for the cutting and removal of specific sections of DNA. The lipid nanoparticle (or LNP) serves as a means of delivering CRISPR-Cas9 to the DNA so it can enter and begin cutting away the virus. In simpler terms, think of the CRISPR-Cas9 as a pair of scissors. While they’re very good at cutting, they still need a hand to guide them. In this metaphor, RNA is the hand that shows the CRISPR-Cas9 scissors where to go and where to cut. Both of them are housed inside the LNP, which is essentially a small ball of fat that acts like a box built to hold the scissors and their instructions. It’s also what allows CRISPR-Cas9 to enter the DNA where it can take over, target the virus, and start cutting. Once CRISPR-Cas9 has completed its task, researchers look at the DNA to see how much HIV remains — and the current results are very encouraging, to say the least. “Our system is demonstrating nearcomplete HIV elimination in vitro across several assays, with

no detectable off-target edits,” Howard Gendelman, scientific cofounder of Exavir Therapeutics and professor in the Department of Pharmacology at the University of Nebraska Medical Center, said in a press release. What this means is that, in a series of tests, the virus was reliably and effectively removed from the DNA because CRISPR-Cas9 and RNA were able to accurately target the virus. According to Exavir, this technology resulted in “up to 100% suppression of [the] virus,” adding that its findings support that this treatment, used as antiretroviral therapy, has the potential to completely eradicate HIV. Without question, this data marks an incredible advancement in the fight against HIV. That said, it’s still many years away from being approved by the Food and Drug Administration for use, as it’s still very early in the research and development process. The data comes from research conducted using cell lines that, while derived from humans, aren’t exactly representative of people. In other words, the process still needs a great deal of further study. Ultimately, these results serve as a very encouraging proof of concept — and one we will have to follow closely to see how it develops in the coming years.

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T R E AT M E N T

HIT ME WITH YOUR BEST SHOT A new injectable prevention option could be a gamechanger for serodiscordant couples.

HUNGRY FOR CHANGE HEALTHY EATING HABITS ARE IMPORTANT FOR EVERYONE, BUT ESPECIALLY THOSE LIVING WITH HIV.

DR AGAN DJ U KIC/U NSPL ASH (FRU IT ); SH UT TERSTOCK (COU PLE )

BY N E A L B R OV E R M A N

The south African nation of Zimbabwe made significant strides against HIV in recent years, with local reports indicating nearly three-quarters of people living with the disease are now on antiretroviral medication. But there is an obstacle to better health outcomes for individuals on treatment, at least according to Moreni Masanzu of the Zimbabwe National Network of People Living With HIV: nutrition. Speaking in broad terms to the nation’s Herald newspaper, Masanzu said poor nourishment — whether because of poverty, personal choices, or lack of access to healthy food — is undermining the effect of treatment on people living with HIV. “It is important to note that for people living with HIV to take their medication they consistently need to have a healthy diet,” Masanzu said. “It is, however, unfortunate that most people living with HIV do not have good nutrition to support their positive living mandate. Poor diet among people living with HIV is leading to defaulting because ARVs are heavy medications that need someone to eat well.” While American officials and HIV leaders are less prone to generalize about people with HIV and their eating habits, the government’s National Institute of Health does stress the importance of good nutrition for folks living with the virus. According to the NIH’s HIV website, which was just updated last year, “In people with HIV, good nutrition supports overall health and helps maintain the immune system.” Additionally, “Good nutrition also helps people with HIV maintain a healthy weight and absorb HIV medicines.” So, what counts as good nutrition? The Food and Drug Administration recommends women aged 31 to 59 consume about 1,600 to 2,200 calories a day, while men in this age group need about 2,200 to 3,000 calories a day. In its Dietary Guidelines for Americans, 2020-2025, the FDA encourages adults to consume three to four cups of vegetables a day and approximately two to three cups of fruit. Six to 10 ounces of grain is also recommended, as well as three cups of any dairy and five to seven ounces of protein. Not surprisingly, the agency also encourages limiting sugars, sodium, and saturated fat. For more facts and tips on healthy eating — including recipes — visit Nutrition.gov.

The first long-acting injectable option to prevent HIV transmission among those at risk for acquiring the virus was approved by the Food and Drug Administration, the agency announced in December. This is not only great news in terms of significantly limiting the transmission of HIV overall, it could also be life-changing for serodiscordant couples (when one partner is HIV-positive and the other is not) seeking long-term prevention methods. Apretude, from ViiV Healthcare, will soon be available for anyone who is considered at risk for HIV and weighs at least 77 pounds. The injection is administered as two shots given one month apart, and then an injection every two months after that. Users will be given the option of beginning with oral cabotegravir (Vocabria) for four weeks if there is concern over how they will tolerate the injectable. Gilead’s Truvada pill was approved for use as pre-exposure prophylaxis (PrEP) in 2012, allowing men who have sex with men, trans women, and other groups at high risk of infection a safe, relatively convenient way to prevent HIV. Daily pill adherence is easier said than done, though, as the FDA points out in its announcement about Apretude. “PrEP requires high levels of adherence to be effective and certain high-risk individuals and groups, such as young men who have sex with men, are less likely to adhere to daily medication,” the FDA release states. “Other interpersonal factors, such as substance use disorders, depression, poverty, and efforts to conceal medication also can impact adherence. It is hoped that the availability of a long-acting injectable PrEP option will increase PrEP uptake and adherence in these groups.” While PrEP usage has been increasing for years, it still remains relatively low — only about 25 percent of the 1.2 million people for whom PrEP is recommended are actually prescribed it. The FDA approved Apretude after two randomized, doubleblind trials, with HIV-negative men and transgender women in the first trial and HIV-negative cisgender women in the second. Side effects for Apretude may include injection site reactions, headache, fever, fatigue, back pain, myalgia, and rash. Injectables are already changing the game of HIV treatment, as well as prevention. Last year, the FDA also approved ViiV Healthcare's Cabenuva, the first long-acting injectable HIV regimen. — N B

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• are breastfeeding or plan to breastfeed. Do not breastfeed if you take DOVATO. This is only a brief summary of important information about ° You should not breastfeed if you have HIV-1 because of the risk of DOVATO and does not replace talking to your healthcare provider passing HIV-1 to your baby. about your condition and treatment. One of the medicines in DOVATO (lamivudine) passes into your breastmilk. ° What is the most important information I should know ° Talk with your healthcare provider about the best way to feed your baby. about DOVATO? Tell your healthcare provider about all the medicines you take, If you have both human immunodeficiency virus-1 (HIV-1) including prescription and over-the-counter medicines, vitamins, and infection and Hepatitis B virus (HBV) infection, DOVATO can herbal supplements. cause serious side effects, including: Some medicines interact with DOVATO. Keep a list of your medicines and show • Resistant HBV. Your healthcare provider will test you for HBV infection it to your healthcare provider and pharmacist when you get a new medicine. before you start treatment with DOVATO. If you have HIV-1 and • You can ask your healthcare provider or pharmacist for a list of medicines that hepatitis B, the HBV can change (mutate) during your treatment with interact with DOVATO. DOVATO and become harder to treat (resistant). It is not known if DOVATO • Do not start taking a new medicine without telling your is safe and effective in people who have HIV-1 and HBV infection. healthcare provider. Your healthcare provider can tell you if it is safe • Worsening of HBV infection. If you have HBV infection and take DOVATO, to take DOVATO with other medicines. your HBV may get worse (flare-up) if you stop taking DOVATO. A “flare-up” What are possible side effects of DOVATO? is when your HBV infection suddenly returns in a worse way than before. DOVATO can cause serious side effects, including: Do not run out of DOVATO. Refill your prescription or talk to your ° • See “What is the most important information I should know healthcare provider before your DOVATO is all gone. about DOVATO?” Do not stop DOVATO without first talking to your healthcare ° • Allergic reactions. Call your healthcare provider right away if provider. you develop a rash with DOVATO. Stop taking DOVATO and get ° If you stop taking DOVATO, your healthcare provider will need to check medical help right away if you develop a rash with any of the following your health often and do blood tests regularly for several months to check signs or symptoms: fever; generally ill feeling; tiredness; muscle or joint aches; your liver function and monitor your HBV infection. It may be necessary blisters or sores in mouth; blisters or peeling of the skin; redness or swelling to give you a medicine to treat hepatitis B. Tell your healthcare provider of the eyes; swelling of the mouth, face, lips, or tongue; problems breathing. about any new or unusual symptoms you may have after you stop taking • Liver problems. People with a history of hepatitis B or C virus DOVATO. may have an increased risk of developing new or worsening For more information about side effects, see “What are possible changes in certain liver tests during treatment with DOVATO. side effects of DOVATO?” Liver problems, including liver failure, have also happened in What is DOVATO? people without a history of liver disease or other risk factors. DOVATO is a prescription medicine that is used without other HIV-1 Your healthcare provider may do blood tests to check your liver. medicines to treat human immunodeficiency virus-1 (HIV-1) infection Tell your healthcare provider right away if you get any of the in adults: who have not received HIV-1 medicines in the past, or to following signs or symptoms of liver problems: your skin or the replace their current HIV-1 medicines when their healthcare provider white part of your eyes turns yellow (jaundice); dark or “tea-colored” urine; determines that they meet certain requirements. HIV-1 is the virus that light-colored stools (bowel movements); nausea or vomiting; loss of appetite; causes Acquired Immune Deficiency Syndrome (AIDS). It is not known and/or pain, aching, or tenderness on the right side of your stomach area. if DOVATO is safe and effective in children. • Too much lactic acid in your blood (lactic acidosis). Too much Who should not take DOVATO? lactic acid is a serious medical emergency that can lead to death. Tell your healthcare provider right away if you get any of Do not take DOVATO if you: the following symptoms that could be signs of lactic acidosis: • have ever had an allergic reaction to a medicine that contains dolutegravir feel very weak or tired; unusual (not normal) muscle pain; trouble breathing; or lamivudine. stomach pain with nausea and vomiting; feel cold, especially in your arms • take dofetilide. Taking DOVATO and dofetilide can cause side effects that and legs; feel dizzy or lightheaded; and/or a fast or irregular heartbeat. may be serious or life-threatening. • Lactic acidosis can also lead to severe liver problems, which can What should I tell my healthcare provider before using DOVATO? lead to death. Your liver may become large (hepatomegaly) and you may Tell your healthcare provider about all of your medical conditions, develop fat in your liver (steatosis). Tell your healthcare provider right including if you: away if you get any of the signs or symptoms of liver problems • have or have had liver problems, including hepatitis B or C infection. which are listed above under “Liver problems.” • have kidney problems. • You may be more likely to get lactic acidosis or severe liver • are pregnant or plan to become pregnant. One of the medicines in DOVATO problems if you are female or very overweight (obese). (dolutegravir) may harm your unborn baby. • Changes in your immune system (Immune Reconstitution ° Your healthcare provider may prescribe a different medicine than DOVATO Syndrome) can happen when you start taking HIV-1 medicines. Your if you are planning to become pregnant or if pregnancy is confirmed during immune system may get stronger and begin to fight infections that have the first 12 weeks of pregnancy. been hidden in your body for a long time. Tell your healthcare provider right If you can become pregnant, your healthcare provider may perform a ° away if you start having new symptoms after you start taking DOVATO. pregnancy test before you start treatment with DOVATO. ° If you can become pregnant, you and your healthcare provider should talk about the use of effective birth control (contraception) during treatment with DOVATO. ° Tell your healthcare provider right away if you are planning to become pregnant, you become pregnant, or think you may be pregnant during treatment with DOVATO.

Important Facts About DOVATO

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SO MUCH GOES INTO WHO I AM H Why could DOVATO be right for you? DOVATO is proven to help control HIV with just 2 medicines in 1 pill. That means fewer medicines* in your body while taking DOVATO. It’s proven as effective as an HIV treatment with 3 or 4 medicines. Learn more about fewer medicines at DOVATO.com DOVATO is a complete prescription regimen to treat HIV-1 in adults who have not received HIV-1 medicines in the past or to replace their current HIV-1 medicines when their doctor determines they meet certain requirements. Results may vary. *As compared with 3- or 4-drug regimens.

What are possible side effects of DOVATO? (cont’d) • The most common side effects of DOVATO include: headache; nausea; diarrhea; trouble sleeping; tiredness; and anxiety. These are not all the possible side effects of DOVATO. Call your doctor for medical advice about side effects. 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. Where can I find more information? • Talk to your healthcare provider or pharmacist. • Go to DOVATO.com or call 1-877-844-8872, where you can also get FDA-approved labeling. Trademark is owned by or licensed to the ViiV Healthcare group of companies. March 2021 DVT:6PIL

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buzzworthy

SPEAKING HIS TRUTH

EMMY AWARD-WINNING JOURNALIST LIONEL MOÏSE RECENTLY OPENED UP ON INSTAGRAM ABOUT LIVING WITH HIV. T H E S E DAY S , M O R E and more people are

using social media to speak truth to power — and many are also using it as a way to open up the conversation around HIV. Recently, in honor of World AIDS Day, Emmy Award-winning journalist and anchor for ABC News Radio Lionel Moïse took to Instagram to talk about his own personal journey living with HIV. On December 1, Moïse quietly came out as HIVpositive on the popular social media platform. The former college football player captioned his post — which included the above photo along with several images containing text that related his history with HIV — with, “Sharing my story in hopes of helping others.” “I’ve dedicated my life to storytelling, discovering the truth, and being the voice for the

voiceless. But today, it’s my time to tell my truth. I am HIV-positive,” he shared in the post. Though today’s medications make HIV a manageable condition, Moïse says that the initial diagnosis made him think about his own mortality and made him appreciate life more. “With treatment,” he added, “I am healthy and undetectable. I’ve learned to truly cherish each moment, and also realized we all will die one day — but it’s how we live that truly matters. Facing death has taught me to live each day to the fullest, and to use those days to help others.” He concluded with some advice: “For anyone who is struggling with their diagnosis, remember that you are still YOU.... Show yourself the same compassion you show others and know that things do get better.”

COU RTESY LION EL MOÏSE

BY DESIRÉE GUERRERO

MARC H / APRI L 202 2

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COU RTESY INSTAG R AM

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AT-HOME HEALTH

AS OF 2022, CALIFORNIA IS REQUIRING HEALTH INSURANCE COMPANIES TO COVER AT-HOME STI TESTS.

O N JA N UA RY 1 , California officially became the first

state to require health insurance plans to cover at-home STI tests, according to Edge Media Network. The decision came soon after the results of an extensive survey and report was released by the National Coalition of STD Directors. Health officials and advocates are hopeful this move will make it easier and cheaper for Californians to self-administer tests at home and bring better STI monitoring (including HIV testing) to rural and underserved parts of the state, reduce the stigma patients experience when seeking care, and give them more control over their sexual health. Even before the COVID-19 pandemic hit in early 2020, the Centers for Disease Control and Prevention’s data showed that sexually transmitted infections have hit all-time highs in the U.S. and California for six years in a row. High rates of congenital syphilis, which babies contract from their mothers, illustrate the dire need to address the growing STI issue, as cases were up 279 percent from 2015 to 2019 nationally, and 232 percent in California. Of the 445 cases of congenital syphilis in California in 2019, 37 were stillbirths. “We have children born in California with syphilis,” said state Sen. Richard Pan (D-Sacramento), a pediatrician who wrote the law, in a statement. “You’d think that went away in the Victorian era.” The requirement to cover at-home testing is part of a broader law (California Senate Bill 306) that is addressing the STI epidemic, and much of the data

points to COVID as a major factor in the ongoing issue. Experts say hospitals and health departments are limiting services as they try to manage COVID, all while quarantines — and general anxiety — keep some people from visiting clinics in person. According to NCSD’s survey, most respondents (up to 78 percent in one survey) have diverted much of their STI workforces to test and monitor COVID. A report that accompanied the survey stated that some STIs remained “completely unchecked” due to reductions in clinic hours, diversion of resources, shortages of testing kits, and staff burnout. The new at-home testing plan is not without its issues though. So far the rule has only been applied to private state-funded insurance plans. The bill was also supposed to affect the state’s Medicaid program, Medi-Cal, but gliches in its billing system have caused major delays. Also, federal regulators have not approved the tests for home use, which could make labs reluctant to process them. In addition, a state analysis predicts that most in-network health care providers won’t start prescribing home tests for at least a year until they adjust their billing procedures. “This is the first law of its kind, and I’d say it’s kind of cutting-edge,” said Stephanie Arnold Pang, senior director of policy and government relations at NCSD. “We want to bring down every single barrier for someone to get STI testing, and out-of-pocket cost is a huge factor.”

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BY DESIRÉE GUERRERO

MARC H / APRI L 202 2

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SAFE TRAVELS

A new resource helps folks living with HIV travel safely — so they can just relax and recharge.

SH UT TERSTOCK

Pack your bags — the International LGBTQ+ Travel Association recently produced a much-anticipated HIV Travel Guide. This handy, easy-to-navigate online guide from IGLTA, the premiere LGBTQ+ travel organization, shows which countries might present difficulties for those travelers living with HIV. Fortunately, “Whilst some countries refuse work or residency visas for people with HIV, most do not restrict those with HIV from traveling for holidays, short visits, or those in transit,” says Dr. Tristan Barber, consultant in HIV Medicine at London’s Royal Free Hospital, and chair of the Education and Scientific Subcommittee of the British HIV Association. One of the top tips the guide offers is to make sure you have more than enough of your HIV meds before you leave home. “Travelers with HIV must ensure they have enough medication for their trip, with extra in case of travel delays or disruptions,” reiterates Barber. The IGLTA HIV Travel Guide also lists advisories showing which countries are unsafe or should give caution to those considering a visit. Nearly 20 countries will deport foreigners discovered to be living with HIV, while LGBTQ+ sexual relations are criminalized in more than 70 other countries, with over a dozen punishing same-sex sexual relations by death. You can learn more about the IGLTA HIV Travel Guide online and also download a copy (IGLTA.org). —D O N A L D PA D G E T T

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45%

The percentage of new HIV diagnoses among gay and bisexual men in the United Kingdom in 2020.

50%

The percentage of new HIV diagnoses among heterosexual men and women in the U.K. in 2020. According to the latest data, the number of new HIV diagnoses among gay and bisexual men fell to the lowest point in 20 years in the United Kingdom. And for the first time, straight men and women accounted for more new HIV diagnoses than gay and bisexual men. Source: an HIV surveillance report by Public Health England

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GOODBYE TO AN HIV WARRIOR SCOTT ROBBE, AN INTEGRAL MEMBER OF GROUPS LIKE ACT UP AND QUEER NATION NY, PASSES AWAY. BY JD GLASS

S CO T T R O B B E , an activist for HIV and LGBTQ+ issues, who participated in an infamous protest at the New York Stock Exchange in September 1989 to blast the record high price of AZT (the only treatment for HIV at the time), died on November 21. Robbe, who had been diagnosed over a year ago with myelodysplastic anemia — a form of blood cancer — had been at his sister’s home in Hartford, Wis., in hospice care. He was 66 years old. While at college in Madison, Wis., Robbe began attending protests for progressive causes. After moving to New York City and then experiencing the wreckage of AIDS, Robbe became one of the earliest members of groups like ACT UP and Queer Nation NY. Robbe would eventually become a TV, film, and theater producer, bringing his activism with him when he relocated to Los Angeles in 1991. Robbe helped found Out In Film to battle homophobia, both in front of and behind the camera, after a series of films like The Silence of the Lambs and Basic Instinct offered unflattering depictions of LGBTQ+ characters. Robbe amassed numerous television credits and produced shows for Lifetime, Comedy Central, VH1, Children’s Television Workshop, and American Playhouse. He was also part of the original creative team for Bravo’s Queer Eye for the Straight Guy. Diagnosed with HIV in the early 1990s, Robbe, who had also been the executive director and film commissioner for Film Wisconsin, Inc., is survived by his mother, siblings, and several nieces and nephews. Donations in Robbe’s memory can be made to Broadway Cares/Equity Fights AIDS (BroadwayCares.org) as well as to ACT UP NY (ActUpNY.com).

COU RTESY FACEBOOK /AC T U P NY ALU M NI

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VIVA PEDRO

PEDRO ZAMORA’S FORMER REAL WORLD CASTMATES REMEMBER THEIR LATE FRIEND AND HIS LASTING IMPACT. BY DESIRÉE GUERRERO

KEN PROBST (Z AMOR A); ARU N N E VADER-WIREIMAG E (LING & WINICK )

ABOVE Late activist Pedro Zamora RIGHT Zamora’s Real World castmates, Pam Ling and Judd Winick

I F YO U A R E of a certain age (say, in your 40s or older), you likely know the name Pedro Zamora. The bright young activist made an enormous and lasting impact on an entire generation when he publicly shared his battle with HIV on national television, during a time when stigma and ignorance ruled. Sadly, that same generation experienced just how devasting the effects of HIV could be when, at the tender age of 22, Zamora died due to complications of the virus hours after the last episode of The Real World: San Francisco — in which he was costarring — aired in 1994. Recently, and some 27 years later, host Karl Schmid sat down with Zamora’s former Real World castmates, Pam Ling and Judd Winick on the Localish network series, +Life TV (PlusLifeMedia.com). Ling and Winick became close with Zamora while filming the popular MTV reality series and were heartbroken by his untimely death. Since then, the two (who have remained a couple since the series ended and now have a teenage daughter) have been steadfast allies to the HIV community. Winick even wrote a book for young adults about his friendship with Zamora, titled Pedro and Me. In the discussion with Schmid, the couple reflected on Zamora’s life and lasting impact, the current state of HIV stigma, and the advances in science that have been made since his passing. “Just by being on TV, just by showing people for the very first time what it was like just to live your life [with HIV] — and [that] actually his life is not that different than anyone else’s,” Zamora made a huge difference, Winick said. “It’s one of the reasons why, all these years later, we’re still talking about him. Because the message hasn’t changed, and the importance of his story hasn’t diminished.” H IVPLUS MAG .CO M

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d a i ly d o s e

by ashle y innes

SHE RISES

Merriam Webster defines survive as “to remain alive or in existence: live on, to continue to function or prosper.” That’s exactly what comes to mind when I think of long-term survivors of HIV. I think of people living through a time when there was no end in sight. Functioning in a time when it was often hard to get by day-by-day. Prospering in a time when our government would barely acknowledge that the epidemic existed. Despite all the hardships they have survived, they are still here, and many are helping to ensure others survive along the way. In honoring long-term survivors and National Women and Girls HIV Awareness Day on March 10, I had the opportunity to speak with Ms. Kathy Bennett. She is a 63-yearold Black woman who has been living with HIV for over 31 years. She recently led the longest running HIV support group in Maryland. Bennett was diagnosed in 1990, which wa s a time of great uncertainty. Her journey is unfortunately a very familiar one. She recalls in 1995, “We were just helping each other, because they didn’t have the medicine. As for myself, I was very ill, and my doctor was treating me and my best friend. And my best friend didn’t make it, and I knew I was right behind her.” Bennett was also living with Hepatitis C and her liver had started failing. Her doctor told her she was too ill for him to treat her. His only advice was for her to prepare a living will. And with that, she laid in bed for four months waiting to die. 16

SH UT TERSTOCK

GAY MEN ARE NOT THE ONLY LONG-TERM SURVIVORS OF HIV. HERE IS ONE WOMAN’S STORY OF LIVING WITH HIV FOR OVER THREE DECADES.

MARC H / APRI L 202 2

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COU RTESY K ATHY B EN N E T T; COU RTESY ASH LE Y IN N ES

Not long after that, her doctor came to her again and told her about new drugs that were available. At the time he didn’t know what they were going to do, but she also had nothing to lose. Bennett started taking the medication and was undetectable within four months. For her, it felt like a miracle, and she just thanks God that the right medicine came along at the right time. Bennett knows firsthand about the progress that has been made in HIV treatment and considers it “a dream come true,” as over time she has gone from taking 18 pills a day to now taking one pill, once a day. Before reaching undetectable, Bennett, like so many, was struggling to get by. She was dealing with addiction and incarceration. She was witnessing loved ones succumb to the same condition she was trying to manage. As a means of coping, she started attending a support group at the Institute of Human Virology. It was run by Dr. Joe Jacques, a psychologist who was also living with HIV. During the time Bennett became sick, she also became suicidal. She said she would have rather ended it herself than let the virus do it. When Jacques heard this, he introduced her to a HIV specialist and promised he’d take good care of her. The specialist was the same doctor who would later introduce her to antiretroviral treatment. Years later, Bennett was healthy and began working at the Institute herself. By now, Jacques had passed away and Bennett felt this was the opportunity to take up the torch. She went on to work under the Jacques Initiative and lead its HIV support group in Baltimore for 18 years. After being a true testament to giving back and providing for others, Bennett was able to retire in November of last year. She says, “I feel as though the program had God’s hands on it, because he knew people were dying... and they had a safe place to come to.” Bennett believes strongly in creating that safe space and getting to the heart of people. She says that regardless of how far we have come with medicine, many people are still broken. Whether it be substance use, mental illness, homelessness, or poverty, we must get to the spirit of the people, connect with them, and address their needs. At this point in her life, HIV is not difficult for Bennett to deal with, yet she herself has still faced recent challenges. Last year she was engaged to be married and didn’t know her fiancé was using drugs. He died of an overdose and two days after he was buried, Bennett

Kathy Bennett

tested positive for COVID. A month later she had an aneurysm and a stent was placed in her brain. She went from once again not wanting to live to continuing to fight through it all. Her resiliency never stops. Bennett wraps up our conversation by saying, “I would like people to know that even with all that I’ve been through in my life, I am a survivor. I survived all the obstacles that were in my way. From incarceration to being homeless to substance abuse to staying in bed [for] months, being told to get your life in order…. I overcame all of that, and then just recently what I went through was worse than being diagnosed [with HIV]. And guess what…still I rise! And I tell people whatever you do, it ain’t over until it’s over.” Bennett is living proof that long-term survivors are vital to the HIV movement. There is wisdom in their experience. There is growth in their journey. There is beauty in their survival. These are our elders in the fight against HIV. Speak their names. Tell their stories. Give them their flowers while they are still here. To all the long-term survivors of HIV, I am humbled and grateful. I am humbled by what you have lived through and grateful you have made it this far. Thank you for starting this fight. I look forward to the day when we can finish it. Until then, keep surviving, keep thriving.

ASHLEY INNES is a writer and HIV advocate. Follow her on Twitter @Ash_Innes.

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I’M A SURVIVOR

Members of an online long-term survivor support group open up about their own personal journeys of living with HIV.

Originally from San Luis Potosi in central Mexico, San Francisco’s JESÚS GUILLÉN, 61, is a musician, vocalist, photographer, spiritual healer, and a long-term survivor (LTS). After living with HIV for over three decades, he is partially disabled from neuropathy (a form of nerve damage), a side effect from a pre-antiretroviral drug regimen, and suffers from chronic pain. Guillén also went through a brutal battle with lymphoma and deals with PTSD, primarily due to living through the early years of the AIDS epidemic and seeing so many of his peers succumb to the virus. It’s because of issues like these, especially around mental health, that Guillén founded his Facebook group, HIV Long-Term Survivors, in 2016 — which is now over 5,000 members strong. “I like to think that we are helping with the main problems of isolation and loneliness,” he says. Guillén also appeared in Last Men Standing, the 2016 award-winning documentary film about long-term HIV survivors. For this very special issue focusing on long-term survivors and older adults living with HIV, several members of Guillén’s Facebook group opened up about their journeys of living with HIV for decades. Though there is certainly tragedy and hardship throughout their stories, all is not doom and gloom. In fact, we hope you’ll find inspiration in their strength, dignity, and perseverance.

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SH UT TERSTOCK (HAN DS); COU RTESY (GU ILLÉN)

BY DESIRÉE GUERRERO

1/27/22 9:25 AM

COU RTESY MARK JAN ES

MARK’S STORY “I was initially diagnosed with HIV at an anonymous test site in Denver, Colo., after being advised to by a doctor after being diagnosed with a shingles outbreak,” recalls long-term survivor of HIV, Mark Janes. “There was still some pain and sleep deprivation from the shingles, so when the man told me, I was somewhat numb. He gave me a portfolio with information about resources. I thanked him and went out to my car.” After surviving the initial shock of his diagnosis, Janes says he was hit with another devastating blow: he might not live for much longer. “I then contacted my primary care doc and he re-ran the HIV screening test along with a T-cell panel. When that came back a couple weeks later, my initial CD4 count was 89. At that time that amounted to an AIDS diagnosis, and while my doctor refused to say how long I’d live, I was told it’d be wise to get my affairs in order. I’d already seen several people die from AIDS, and it basically shattered my world.” Now that antiretroviral medication makes HIV a manageable condition, it may be hard to fathom what young people like Janes were experiencing at the time. But, for one moment, imagine what it would be like to be told your life would most likely be over in your 20s. “I was very fortunate to have parents [and] other family and friends who were very supportive throughout the years I was struggling,” say Janes. “I was able to get onto newer drugs as they came out, then onto combinations, but wasn’t able to entirely hold off other opportunistic infections. I had outbreaks of Kaposi’s Sarcoma twice; chemo agents promptly brought those under control — but came at a cost of their own, along with what early HIV meds did. They kept us alive, but… very often at a cost.” Then, says Janes, his HIV pharmacist called him to offer him a spot in an especially promising new drug trial. “It involved mixing up and injecting a new type of HIV drug twice a day, subcutaneously,” he explains. “At that point I had just finished a second course of chemo, weighed 130 pounds, and had a CD4 count of 97.” In other words, he had nothing to lose. Miraculously, the meds — an early form of today’s effective antiretroviral treatment — worked. And well.

Within a month, “I had my viral load below detectable,” says Janes. Now, a few decades later, Janes finds comfort and support in finding other folks living with HIV. “In more recent years, a relative convinced me to open a Facebook account, and I found there that I could readily connect with others with HIV around the U.S. and the globe,” he says. “It was there that I met [prominent HIV activist] Maria Mejia. She asked me if I wanted to help her [administer] a group that would have a global reach; a place where those with HIV and their friends could gather without being bothered by the various scams and other pressures found online.” Janes says the group has grown beyond what he’d ever imagined and he finds purpose and fulfillment in helping others living with HIV through the group. “It’s gone from a few hundred members then to over 12,000 members today,” adds Janes. “Because of [Mejia] I have flown to Washington, D.C., several times — in order to learn more about HIV and outreach or to advocate for those who otherwise have no voice. I’m also often answering queries from around the globe, from matters as simple as what to do if you miss a dose to as specific as whether a given medication combination is safe for a mother nursing an infant. This has given me a way to make things better for those who’ve been diagnosed recently — and things are much better today than back a quarter century ago.” Still, Janes says, long-term survivors of HIV continue to live with their share of challenges. “Long-term survivors have a unique set of challenges, some of which were only discussed as problems for the future. For example, it was believed that some HIV meds could be harmful to the heart, kidneys, or liver, but that was seemingly far off. People were dying from AIDS then and there; anything that bought time was seen as a good thing. In those of us who survived, we have numerous bodily systems that are more aged than a healthy person our age. Many, if not most, have some degree of PTSD from living with something they’d seen brutally kill people they loved. And yet, the mainstream HIV community seemingly wants to move on, to sweep us grizzled old survivors under the rug.” Despite the grief and suffering Janes has gone though, he remains resilient and still finds joy in all that life has to offer. “I cook and bake, both for pleasure and to remain safe during COVID,” he says. “I like to walk into town, about a mile away, and I enjoy riding my motorcycle around west Sonoma County. When the mood strikes me or something needs to be said, I create memes and [Facebook profile] frames for social media.” H IVPLUS MAG .CO M

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Keith Dole, 65, is a retired long-term survivor who loves “to garden, read, and exercise.” He first discovered he was HIV-positive in 1983. “My partner got sick with AIDS,” recalls Dole. “Even though the ELISA test [the first test to detect HIV] didn’t come out until 1985, I knew deep down I had been infected. I was totally devastated. My whole world dropped out from under me. There were no medical or social support services available in Ft. Lauderdale in the early ’80s.” Back then, Dole recalls people with living with HIV were ostracized and, with the exception of a few caring allies, often felt very much alone in the world. “I was [my partner] Douglas’s sole caretaker,” he says. “We had no friends to rely on at that time. We had to travel to Miami to see the wonderful Dr. Margaret Fischl. My days consisted of working eight hours, then traveling one hour from Fort Lauderdale to South Miami to visit Douglas at night — and then coming home, going to bed, and starting all over again the next day.” And the trauma didn’t end there, Dole says. There was little support to turn to when the hardest of times struck, and depression and grief took over. “Douglas died at home in February 1985…. I had no support system to help me with my grief. I remember taking Benadryl to sleep all the time. That’s the only way I could handle it. I would work during the day, come home, take the pills, sleep, and on weekends I would take them during the day and sleep the weekends away.” Still, greater challenges were to come for Dole — he still had to deal with his own HIV diagnosis. And workplace discrimination. “When the test came out a bit later and my diagnosis was confirmed, I was told to ‘get my affairs in order.’ The doctor called me at work at American Express to tell me I was positive, and I broke down at my desk. My supervisor asked me what was wrong and I made the mistake of telling her. She rushed me down to the nurse’s office, where I was immediately sent home. The company doctor flew in from New York the next day and threatened me. [They told me] that I would lose my job if I told anyone…. They sent me to a psychiatrist to ensure that I wouldn’t spill the beans.” Dole explains how very difficult those years were. “I lived with a loaded gun to my head from 1985 until the drug cocktails came out in early 1996. I tried AZT in the late ’80s, and I stopped because the side effects were so bad.” 20

Looking back he says, “It’s not been an easy journey. People who I have been with made me keep my status a secret. The only group support that I’ve received is from the long-term HIV survivor group on Facebook. I moved from Fort Lauderdale to Greensboro, N.C., in 1986 with Amex, and there really were no support systems in place here. That’s true to this day.” On some of the biggest challenges facing longterm survivors today, Dole says the “management of comorbidities” is a common issue. “I have bad neuropathy [from early HIV meds] in my feet and am unable to wear shoes and socks. I have cognitive problems, HAND [HIV-Associated Neurocognitive Disorder], chronic kidney disease, liver disease, high blood pressure, high cholesterol, arthritis, depression, anxiety, PTSD...[and] feeling invisible as we age.” These days, Dole combats his depression and physical comorbidities through mindfulness and physical activity. “I go to the gym five days a week. Because of the neuropathy, I exercise 30 minutes a day on a recumbent bicycle, three days a week. I do light weights to keep my bones strong, and my muscles toned…. I also meditate and read books on spirituality.”

COU RTESY KEITH DOLE

KEITH’S STORY

MARC H / APRI L 202 2

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COU RTESY TIM STANCELL- CON DRON

TIM’S STORY

Tim Stancell-Condron, 62, has been living with HIV since the mid-1980s, and currently spends “quite a bit of my time volunteering. I am on the New England leadership board of the American Lung Association and am an active member of the Patient Advocacy Council at Dana Farber Cancer Institute, as a LTS with a history of lymphoma and small cell lung cancer. I also speak to various medical groups on my journey as a LTS of HIV.” Stancell-Condron says he was he was in his mid-20s when he learned he was living with HIV. “It was a mixture of terror, shame, guilt, and fear, as there were no drugs and everyone around me was starting to die. I never told anyone I was infected for over 12 years. Even after I got my AIDS diagnosis.” Despite the trauma and terror of those days, StancellCondron says his journey living with HIV has been cathartic in many ways. “As I look back, my journey has been wonderful, difficult, and blessed,” he says. However by the early ’90s, “I was diagnosed with full blown AIDS, [with] less than 100 T cells, pneumocystis pneumonia, and, at 6 feet tall, weighed less than 140 pounds.” From there, his outlook only looked bleaker, says Stancell-Condron.

“In my late 30s I was diagnosed with stage 2 non-Hodgkin’s lymphoma, and in 2015 I was diagnosed with small cell lung cancer, with less than a 20 percent chance of survival. And recently, I left the workforce due to mild cognitive impairment due to HIV and chemo.” Despite his physical ailments and PTSD related to HIV, StancellCondron says he still has always tried to remain positive, even when there was little hope to cling to. “Even with all these issues, I never let it stop me from moving forward and living. I have, and have had, wonderful people and family in my life. I have done so much and am so grateful today. The positive outweighs the health issues by a long shot.” However, coping with all this trauma has been difficult at times, he admits. But he finally found the courage to own his diagnosis. “I kept my HIV hidden for a very long time,” Stancell-Condron says. “Honestly, I had never spoken with family and friends about my HIV until the last couple years. I used to be so ashamed and afraid of the stigma, and the fear of being discriminated in the workforce. So, I never really asked for the support until recently. My coping skills were fear and denial.” As far as the biggest challenges today facing long-term survivors, Stancell-Condron says, “I worry, as we age, the story is getting lost and it is such an important part of history that needs to be told — and should be taught in every classroom. We need to keep the story alive. I also worry that younger doctors today don’t understand the type of care we have received in the past and I worry LTS are not getting the care they need. That is why I speak to groups of younger doctors and caretakers.” These days in order to stay happy and healthy, Stancell-Condron says, “I meditate every morning, bike or walk, and try to do yoga in the evenings.” H IVPLUS MAG .CO M

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SHELBY’S STORY

Welchel says it was through helping others that she finally began to find some healing and a sense a purpose. “I worked 35-plus years in different foundations, organizations, and networks in the HIV/AIDS world — with men, women, and children,” she says. “It was and still is my world. I was very successful in helping others and there is not a day I regret working in communities with HIV/AIDS. This is family to me.” “They have been my support system throughout the last 40 years — and I will continue to be their support system,” adds Welchel. “I will continue to help anybody and everybody that I can until the day I die…and I hope that won’t be for another 40 years…. I am blessed and I am an artist and I am a survivor. I love you all for life!”

COU RTESY SH ELBY WELCH EL

Since the beginnings of the epidemic, HIV has disproportionately affected gay and bisexual men, so we often forget that there are others — like women and youth — who are longterm survivors as well. One such person is Shelby Ann Welchel. Welchel is truly a survivor in more ways than one. Before being diagnosed as HIV-positive 40 years ago, she survived a horrific act of violence that took the life of her young son and nearly left her dead. In 1982, Welchel says, “I was diagnosed [after] a man shot and killed my 18-month-old son and proceeded to shoot me in the face, head, and back, and then he turned the gun on himself. When I woke up from a two-and-a-half-year coma in the hospital in February 1985, I was told that I had “GRID” [gay-related immune deficiency, the first name for HIV and its effects]. There were only 15 [known cases] of us women in the world that had GRID!” After some difficult years dealing with the trauma and grief of what had happened to her, Welchel explains that in many ways, it was also a period of rebirth for her. “So, this is when my life started,” she says. “Well, I was in recovery for two years and when I came out, I became a self-taught abstract artist. I finished school, got my associate’s degree and started working as a caseworker with women and men that had domestic violence issues, and also with AIDS foundations and organizations in [various] states.”

MARC H / APRI L 202 2

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COU RTESY DAVID SPIH ER

DAVID’S STORY David Spiher, 63, says he first discovered he was living with HIV in “Columbus, Ohio, in December 1985, as part of the first publicly available HIV tests at an STD clinic. I got a handshake and best wishes. I was 27, working a minimum wage job at $6 and change an hour with no health insurance. For the next nine months I went to work and to my 12-step recovery meeting and then to bed, basically waiting to die. AZT wasn’t even on the horizon yet.” His life did eventually improve, but Spiher still went through some difficult years due to stigma and HIV discrimination. “I was out as a person with HIV in my recovery meetings [and] therapies, but not in any of my jobs until 2016. Employers and people would say it didn’t matter, but you know it eventually did, and people would be ‘let go’ for being 10 minutes late — that kind of passive-aggressive employers covering their asses stuff. I decided to make the artwork I wanted to make and to keep myself employed.” Spiher says happiness came into his life when he found love. However, that would eventually create another hardship to bear. “In 2003, I met my husband, who was newly diagnosed at the time…. We were together for 16 years when he died from early onset Alzheimer’s, likely accelerated by his HIV status.” Now living in Hawaii, Spiher says the island paradise is not without its problems. “I now live in rural Hawaii, health care in general and HIV care specifically are scarce on the ground,” he says, adding that many of the locals “culturally look down on public conversation, and those having that conversation, about health care and HIV. The state is very small — everyone knows everyone eventually. I understand it has ‘gotten better’ but it truly is a thing here.” He also explains that the COVID-19 crisis has only added to the heavy load long-term survivors must carry. “With COVID, the isolation has been pretty intense,” says Spiher, adding that staying in touch with “mainland friends via telephone and Zoom has keep me sane.” Spiher says after that losing his husband he had to find ways to heal and enjoy life again — and he found it in the water. “I was kind of wrecked emotionally and physically after my husband passed,” he says. “I got into the ocean a couple of times, with no stamina, [and] got spit back out right away — the eastside beaches have rough water. In May 2020, I started going to the reopened outdoor public pool in Pahoa. I committed to staying in the water,

moving — not even swimming — for 30 minutes every day they were open. I couldn’t even swim four 25-yard laps without gasping for breath. But it was a start. Today I swim, mostly without stopping, two 45-minute sets, averaging about two miles every day, five days a week. I weighed 140 pounds with no muscle mass when I started [and] I’ve gained 25 pounds of muscle at my last weigh in.” Although he adds with a laugh, “my inner child still screams, ‘Noooo!’ when I first jump into the 70-degree water — it even gets coldish in Hawaii.” Spiher says he also continues to try to make healthy choices for a better quality of life. “In January of 2021, I stopped smoking and started swimming…. My art-making since my husband passed had been in a very…painful place. Since New Year’s, I have made more artwork in the last three weeks than in the last year.” H IVPLUS MAG .CO M

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BY DESIRÉE GUERRERO

PHOTO CREDIT

The Gay Men’s Health Crisis has survived since the first days of the HIV epidemic — and is still caring for those who have survived along with it.

SUZ AN N E POLI/G E T T Y IMAG ES (NYC , 19 8 5); STUART LUTZ /GADO/G E T T Y IMAG ES (NYC PRIDE 19 95)

Marchers from Gay Men’s Health Crisis during the annual New York City Pride March, June 1985

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Spectators watch Gay Men’s Health Crisis representatives carry banners on Fifth Avenue during the 1995 NYC Pride March

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Alejandro Santiago

THE GAY MEN’S HEALTH CRISIS, now simply known as GMHC, is believed to be the first organization to address the HIV epidemic in New York City, when the first cases of a “mysterious new illness” among gay and bisexual men were first identified by health officials in 1981. Though, tragically, we lost countless lives to the virus back in those early days, there are also many others who persevered and survived through those dark times — and who now are aging along with organizations like GMHC. These days, over half of people living with HIV in this U.S. are age 50 or over. And while the term “long-term survivor,” or LTS, used to mainly refer to people who were diagnosed before today’s highly effective antiretroviral medications emerged in the late ’90s, it’s now commonly used for folks who have been living with HIV for a decade or more. No matter how you slice it, there is a huge population of people in this country who are now growing older with HIV. In order to better serve this growing group, GMHC launched the Terry Brenneis Long-Term Survivor Hub in 2018. The Hub’s purpose is to connect people to GMHC’s wide array of nationally recognized services that support the psychosocial and educational needs of adults aged 50 and older. GMHC is also one of the nation’s leading organizations conducting research on long-term survivors and people aging with HIV, with its National Resource Center on HIV & Aging. In 2021, the Brenneis LTS Hub got a major boost when two generous donors, brothers David and Joshua Boger, committed to giving 26

it $500,000 over a period of five years. David Boger, a long-term survivor of HIV himself, donated the funds in honor of his late partner. Because of this, the program was officially renamed the Terry Brenneis and David Boger Hub for Long-Term Survivors (or the Brenneis-Boger LTS Hub for short). “My brother and I are thrilled to be able to provide GMHC with this new support to meet the growing needs of older adults and LTS,” said David Boger, a retired psychiatrist, when the donation was announced last year. “As a long-term survivor myself, I understand firsthand the David Boger

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challenges facing my community. The Hub will provide the intensive support that LTS and older adults need for building resilience and strengthening well-being.” “The Hub has been around since 2018,” says GMHC’s LTS peer support coordinator, Alejandro Santiago. “Originally it was basically designed as in-person [services] for New York City residents, with in-person workshops and support groups. Back then, we had the ability to have these wonderful seminars in person, they’d last a few days. And we’d offer a buddy lunch…. And then COVID made us change.” Since isolation, and subsequent depression and substance issues, have long plagued the LTS community, Santiago says the latest pandemic, COVID-19, has unfortunately only compounded these issues for long-term survivors. “One thing I have noticed the most,” he says, “as a long-term survivor myself — I’m 63 and was diagnosed in ’92 — is a deterioration of mental health because of our isolation, so that’s adding to our mental health issues. And that is adding to our substance abuse issues…. As someone in recovery myself also for 29 years, it is a very different approach to try to help somebody through Zoom than when you were able to go to 12-step type meetings, to an environment with personal contact. Very few [older clients] are open to sharing things through Zoom.”

Santiago explains that, in addition, the growing generation gap between long-term survivors and health care providers can also sometimes be an issue. “As an older generation, it is harder to find someone in mental health — like a therapist or a psychiatrist — who at least was around in some of the ’80s and ’90s, that they could relate to. We have a lot of wonderful younger-generation therapists, however, sometimes it’s really hard to connect to them because they didn’t live through the experiences themselves…so I find that a lot of us are keeping ourselves from reaching out because we don’t connect.” Still, he says things are slowly improving. Through the Hub, GHMC staffers like Santiago do personal check-ins with each client, making sure they have everything they need. And he says many of the older clients have started to open up in virtual sessions, though it can take a little time for them to let their guards down. “There’s a couple of clients I can think of who, from the very beginning, were silent. And now they’re like, ‘Hey, how are you, Alejandro? It’s good to see you!’ You notice that with some of them it’s taken them almost a year to get to that point. And to know each other in the group and say hi to each other on the Zoom call…. Many of us have the fear of connecting with people again because we don’t [want to] lose people again. That plays into it. And COVID has rekindled that feeling.” “Of course,” he adds, “once they realize that whoever is in the room is also a longterm survivor or is over 50, they’re like, ‘OK, so we’re all the same here.’ People have started opening up now, and it’s really creating a good environment.” Despite COVID challenges, the feedback on the Hub from the organization’s older clients living with HIV has continued to be mostly positive. “It’s like a lifeline,” says GHMC client Kim, in a promotional video for the program. “I’m still here and I am so proud.” H IVPLUS MAG .CO M

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E R E ’ E R W ILL HE ST t ins g ye in w arro the h s of HIV. s t n me ivor docu erm su r v lm fi t w A ne s of long ie r RO sto RRE IRÉE

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LAST YEAR, artist and activist Steed Taylor was commissioned by the organization Visual AIDS to create a short film that addressed the HIV epidemic — specifically, the topic of “enduring care.” The result is the incredibly moving, I Am…a Long-Term AIDS Survivor, which is available to view on Vimeo as well as on Visual AIDS’s website (VisualAIDS.org). Taylor says the project held special meaning for him because he is, like all the other people featured in the short, a long-term survivor of HIV. He also appears in the film and shares some of his own story (that’s him at bottom right). “Long-term HIV and AIDS survivors are developing unexpected health problems and new unforeseen challenges, making this a bumpy and dangerous road ahead for many senior survivors,” says Taylor. “I’m part of this group, so it’s personal. Also, many of the survivors wanted their stories to be told.” Before the film opportunity came along, Taylor was no stranger to working in the HIV community. In fact, he’s been helping others with HIV since the very beginning of the epidemic — during a time when many couldn’t face the virus’s often deadly results. “I’ve worked with people living with HIV/AIDS quite a bit,” he says. “Beginning in the ’80s when I was diagnosed and living in Washington, D.C., I helped start the buddy program at the Whitman-Walker Clinic and was a buddy for several years. It was a brutal and difficult time. There was so much suffering and death.” When Taylor moved to New York City in 1990, he started working with Visual AIDS and served two terms on its board of directors — so he was delighted to work with the organization again for the short film project. He explains that his goal was to honor these people’s stories and not shy away from the pain and trauma they have experienced. “The film consists of 42 long-term survivors telling their journey with HIV/AIDS, in their own words,” he says. “I want viewers to see how difficult their lives have been. I want viewers to have an emotional response; I want them to cry.” As this group of original HIV survivors now ages into their senior years, Taylor says it’s important for us, as a society and nation, to not forget this population. He says some of the biggest challenges facing long-term survivors are “not feeling relevant, being forgotten, and a need for more experienced geriatric specialists, age-specific support groups, and social circles.” After completing the film, Taylor says he took much away from the experience — despite how difficult it was to walk through the pain of those early days of the epidemic again. “The stories of so many survivors were absolutely brutal and so difficult to hear,” he says. “But I was lucky. I was able to find [a support system] who listened to me and took my health problems seriously. I had the support of my family, friends, and partners. I had the will to help others. I was wrapped in a blanket of love.”

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Dr. Tyler TerMeer says it was a solid foundation built by strong Black women that helped him become the first BIPOC leader of the San Francisco AIDS Foundation.

BY DESIRÉE GUERRERO

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ounded in 1982, the San Francisco AIDS Foundation was one of the first organizations formed to address the “mysterious new illness” disproportionately affecting gay and bisexual men. First known as the Kaposi’s Sarcoma Research and Education Foundation, SFAF has gone on to become one of the largest and most respected HIV service organizations in the country. Over 25,000 people currently rely on its programs and services per year, and millions more utilize its advocacy tools as well as its online information offerings. So, many may find it surprising that the organization’s new CEO, Dr. Tyler TerMeer, is the first Black individual and only the second living with HIV to helm the foundation in its 40-year history. “I think I was also surprised, [yet] not surprised that I’m the first person of color to lead the foundation,” admits TerMeer. “Not surprised, because, you know, there are very few Black executives in the nonprofit sector leading organizations. And that number becomes drastically smaller when you start to narrow down to specific fields of our sector. Personally, I have taken some time to think about my nearly 18 years now of living with HIV and how unbelievably rewarding that period of time has been for me to cultivate a group of peers that are also Black and brown folks around the country that have been a system of support.” Before taking on his new role at SFAF on February 14, Dr. TerMeer served as CEO at Cascade AIDS Project, the largest communitybased provider of HIV services in Oregon and southwest Washington, for over seven years. During his time there, he helped

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TOP Dr. Tyler TerMeer, as CEO of Cascade AIDS Project, toasting with board president Karol Collymore at CAP’s 2020 Virtual Art Auction fundraiser

COU RTESY T YLER TERM EER

BOT TOM TerMeer with CAP donor and board member Tracy Curtis (center) and director of Camp KC, Kevin Cook (right), at the organization’s camp for kids living with and affected by HIV

the organization grow from 55 employees to over 185, expanded from a one-office location to seven across two states, oversaw a merger with Our House of Portland, and launched Prism Health to serve the primary care and mental health needs of the local LGBTQ+ community. Before that, TerMeer served as the director of public policy and government relations at AIDS Resource Center Ohio and as the director of the Ohio AIDS Coalition. In 2012, he was honored by the White House as one of the Nation’s Emerging LGBTQ+ Leaders and in 2013 was chosen by the White House to be a part of the Nation’s Emerging Black Leadership program. In addition, he has served on the board of directors for Positive Pedalers (PosPeds.org), an HIV-positive cycling group, and has participated in AIDS/LifeCycle’s annual fundraising ride 11 times. He also holds a Ph.D. in public policy and administration from Walden University. TerMeer says that now, especially as a leader in the HIV community, he tries to always remain conscious of the fact that he stands on the shoulders of the many brave souls who came before him in the fight against HIV and its stigma. “I know that I am able to walk in, almost 40 years into the foundation’s history, as their first BIPOC CEO because of the fight for life, access, and dignity that those before me [fought for] — those who we lost to the epidemic and those who have survived that continue to be a part of the momentum of the movement going forward…. Also, just generations of Black people that fought for our rights and a place at the table — my place at the table. It’s a historic moment for the foundation, but also just such an incredible honor.” Now 38, TerMeer says he didn’t necessarily foresee a future in the nonprofit world and was initially drawn to the arts as a young H IVPLUS MAG .CO M

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person, particularly the theater world. Looking back, though, he says it makes perfect sense of where he ended up, since he was “raised by strong Black women who really instilled in me the values that have carried with me through my personal and professional life — of really wanting to give back to the community.” He grew up in Dublin, Ohio, a small suburb of Columbus that he says is “really only famous for being the home of Wendy’s [fastfood restaurants].” It was there that TerMeer says he received a solid upbringing by two key figures in his life: his mother and grandmother. “I was raised by my mother, who is a strong Black woman, and her mother and her sisters, after my dad and mother divorced when I was about 2 years old,” he recalls. “I split time very early on between my mom and my dad, who were an interracial couple — my father is white, and my mother is Black. And unfortunately, when I was pretty young…my father went to prison for a number of years, which was a very life-changing experience for our family.” TerMeer explains that this experience opened his eyes to racism and how one is perceived as a Black person in this country. It also forced him to grow up fast. “Often when I tell that story…when I say one of my parents went to jail, they assume it must be a Black person in my family, but in fact in my experience it was not, it was my father. I think his struggle with alcohol [and] with gambling — ultimately, the struggles that landed him in prison — forced my sister and I to kind of grow up a little bit faster…. I think my hopes and dreams were to find community, to find a sense of stability.”

COU RTESY T YLER TERM EER (BOTH PAG ES)

TerMeer cutting the ribbon at the grand opening of Prism Health, CAP’s LGBTQ+ Federally Qualified Health Center, in 2017

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TOP TerMeer and CAP donor and volunteer Chris Altavilla delivering food boxes to clients during the COVID-19 crisis BOT TOM TerMeer with CAP donor and former board member Jenn Klotz at Bat ‘n Rouge, a charity softball game benefiting AIDS Walk Northwest

Fortunately, TerMeer says the support of the strong Black women in his life helped him keep his head above water through those tumultuous adolescent years, and ultimately gave him an interest in politics and community. “I was really raised in a political household,” he says. “My mom worked in local and state politics all throughout my childhood. I just really saw strong examples of what leadership and true community looks like. My original path was not nonprofit, actually. I thought I was going to go off to New York and work in the arts. I have a bachelor of fine arts in theatrical design from Otterbein University, a small liberal arts college in Ohio. I thought I was going to be a stage manager and that this was my path in life.” However, as he grew into adulthood, he discovered a whole new path to follow. “I think as I was in college, I really learned a lot about myself,” he says. “I finally felt comfortable enough to own various parts of my identity and the intersections of those identities that I sat at as a Black gay man — and then as someone who learned about their HIV-positive status in March of 2004, as I was entering my senior year of college. In that moment, for me — as one of my dear friends in this field would have said when he was alive — HIV in some ways became a beginning, not an end. I think it opened up pathways for me to dive into those values that were instilled upon me by my grandmother. And I really was able to be fortunate enough to have the support system around me to dig deep and to use this new life-changing diagnosis as a moment of opportunity to give back — especially to a community of folks at a local HIV organization, very similar to San Francisco AIDS Foundation, that helped me pick the pieces of my life back up and set me on a path towards stability. And also the ability to thrive with my disease rather H IVPLUS MAG .CO M

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LEFT TerMeer and his mother, Terrie, attending the Kaleidoscope Youth Center’s 25th Anniversary Gala, where he was the keynote speaker

than view it as a life-changing obstacle that I could not overcome.” TerMeer then changed career directions, starting as the administrative assistant to a CEO of an HIV organization and working his way up from “frontline positions” to management. Then in 2014, he landed his first CEO role at Portland’s Cascade AIDS Project. Today, he is focused on his newest task at hand, leading SFAF through 2022 and beyond. The organization’s biggest challenge is dealing with our latest global pandemic, COVID-19, and how it has affected folks living with HIV, TerMeer says. “All of the other social drivers that have fueled the [HIV] epidemic for decades have only been exacerbated during this time of global pandemic. So food insecurity, poverty, access to the care and treatment that folks need and deserve in a safe and 36

affirming way. All of those things — housing instability, mental health, access to programs that are affirming for drug users…have been a challenge for quite some time, but our system has been stressed even more during the pandemic. And so I think in this moment of a pandemic — which, by the way, for people living with HIV, is not the first pandemic they’ve lived in — is the moment where we really need to dig deep and figure out how we’re going to support those communities that have traditionally been furthest from access and opportunity.” TerMeer says he also wants to put more focus on programs and services for longterm survivors and people aging with HIV, since this is now the largest group of people with the virus. “Across the country, more than 50 percent of those living with HIV are now coming close to or are over the age of 50. And we need to figure out ways to continue to be responsive and supportive of a community that is aging with their virus. We need to continue the hard work that has been happening at San Francisco AIDS Foundation for a number of years, but certainly had doubled down on in this time of dueling pandemics, between COVID-19 and racial reckoning in our country. [We need] to figure out how this journey of justice, equity, diversity, and inclusion can continue for the organization.”

COU RTESY T YLER TERM EER (BOTH PAG ES)

RIGHT TerMeer striking a pose with CAP’s board vice president Bil Spigner (left) and former board member Brian Buck (right) at an AIDS Walk Northwest photo shoot

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Actress Vivian Blaine

Divas Who Dared

HOW VIVIAN BLAINE AND A HANDFUL OF OTHER B-MOVIE ACTRESSES KICKSTARTED HIV FUNDRAISING EFFORTS IN HOLLYWOOD. BY MAT THEW RE T TENMUND

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V I V I A N BL A I N E , who originated the role of Miss Adelaide in the iconic 1950 Broadway musical Guys and Dolls (and who would have turned 100 this year) is never listed among Hollywood’s early AIDS warriors, but she deserves to be. In 1983, press agent and off-Broadway producer Alan Eichler — whose YouTube channel is a wealth of stage, TV, movie, and music rarities — came up with the idea of organizing a star-studded fundraiser that wound up being the first theatrical AIDS benefit on the West Coast. 40

Eichler, who had been a press agent for Hello, Dolly! and Hair, was known for working with ladies of a certain age who he hoped to, and often did, restore to their former glory: Yma Sumac, Eartha Kitt, Patti Page. He also worked closely with Tom Eyen, the playwright and lyricist who, in 1982, enjoyed a smash with Broadway’s Dreamgirls. In 1975, Eyen had written the camp play Women Behind Bars, a raunchy parody of prison exploitation films that served as a vehicle for plus-size Halston model Pat Ast and midnight movie star Divine, and a new production

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Women Behind Bars playwright Tom Eyen (seated) with composer Henry Krieger

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at the Roxy on the Sunset Strip in L.A. was taking off with Adrienne Barbeau, Sharon Barr, and Lu Leonard. A friend of Eichler’s, a VJ at the gay bar Revolver, told him that a newly formed organization — which became AIDS Project Los Angeles and is now APLA Health — was having no luck attracting stars to call attention to the runaway AIDS crisis. “They weren’t able to get anybody to do anything — nobody wanted to be associated with the word ‘AIDS.’ Even the so-called gay stars like Bette Midler or Diana Ross, none of them wanted to be associated with that word,” Eichler recalls. This conversation led him to think about the resources at his own fingertips. “I thought, Here I am with these older stars. If the [younger] stars don’t want to tarnish their names with AIDS, the older stars have nothing to lose.” Why not enlist older stars in the fight against HIV — and do it using Women Behind Bars, which already had a gay-friendly audience? Because it was written by Eyen as a valentine to shady ladies of the silver screen, Eichler decided to invite actresses from ’50s movies to make a special appearance at the end of a performance, and then donate all proceeds to HIV charities. It was natural that the first person Eichler asked was Vivian Blaine. He was in the midst of helping the woman once known as 20th Century Fox’s “Cherry Blonde” with a cabaret act. New Jersey-born Blaine had been a bigband singer, worked with Laurel & Hardy, introduced standards like “I Don’t Care Who Knows It” and “I Walked In (with My Eyes Wide Open),” and had starred in the 1945 smash hit State Fair. Her work in Guys and Dolls on Broadway and on the big screen had made her a musical immortal, the definitive singer of “A Bushel and a Peck,” “Take Back Your Mink,” and “Adelaide’s Lament.” In 1983 — more than a decade after Blaine had ably followed Jane Russell and Elaine Stritch into Company on Broadway, belting “The Ladies Who Lunch”— she was 61 and, while a staple on annual best-dressed lists, was no longer a hot commodity. Still, she did

have something to lose by associating herself with the AIDS crisis, as did any still-active star at the time: her conservative fanbase. But it turned out that HIV as a cause was not a career calculation for Blaine — it was personal. In 1984, the year she retired from show biz, she said of her motivations, “It was Easter Sunday when I found out that two of my dear, dear friends — a former agent and a former producer — had died of AIDS.” So when Eichler asked her to join his fundraiser, Blaine was a fast — and first — yes. Not everyone jumped at the chance. “I made up a long list and contacted as many of them as I could locate,” Eichler says. “Got a couple of turn-downs because there were still people who didn’t want to be associated.” Max Drew, a cofounder of AIDS Project Los Angeles, said on local news at the time, “We had many no-responses.” Eichler’s Rolodex saved the day. After Blaine, Eichler enlisted Mamie Van Doren, pointing out that the ’50s bombshell — as outspoken as ever today on Facebook at 90 — also went on to do a string of early AIDS events the following year, including performing at gay bars like Probe in L.A. and Trocadero Transfer in San Francisco, and was L.A. Pride’s grand marshal in 1987. Terry Moore, Marie Windsor, Virginia O’Brien, and Betty Garrett all said H IVPLUS MAG .CO M

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yes, as did Adele Jergens, who hadn’t made a public appearance in almost 30 years. The event came together on a shoestring. “It was a special midnight performance at the Roxy. Everybody worked for free because it was an extra show,” Eichler says. Cast member Sharon Barr says of the evening’s groundbreaking status, “I don’t remember understanding how significant the event was. I certainly had no precognition that this horrible disease would take the lives of the show’s writer, producer, stage manager, and makeup artist, as well as a generation of artists who either showed promise or had already achieved stardom in their field.” Because the show was recognized as the first AIDS benefit of its kind, the press turned out in force, including Robert Osborne, later the household-name TCM movie host and a gay man himself, who covered for Channel 11. The presence of the media — which had shown little enthusiasm for covering AIDS in the context of a threat to the community at large — reinforced the importance of attracting famous faces like Blaine’s to help. A person could say that without star power, the money “never gets anywhere near where the trouble is.” The scene outside the Roxy before the show was festive. “At that time, the early ’80s, Hollywood’s epicenter was the Sunset Strip,” Barr recalls. “Next door to the Roxy was the Rainbow Bar and Grill, Spago was down the street along with the Whisky a Go Go, the Comedy Store, and the Chateau Marmont — which was marked by the mile-high billboard of the Marlboro Man across the street.… It was quite a scene!” Blaine was more than happy to be the face of the event. To promote the fundraiser, she chatted with Meredith MacRae on Mid-Morning Los Angeles, decrying the slow response to the HIV crisis by the federal government. “Absolutely not!” she said when asked if the authorities were doing enough. “They drag their heels about everything. The red tape that you have to go through to get anything done!” Her response is all the more noteworthy considering her Hollywood contemporary Ronald Reagan was in the White House, and enjoyed solid support among many of their peers, including Blaine’s Guys and Dolls costar Frank Sinatra and Rock Hudson — the latter of whom would test positive for HIV within a year. Along with advocating for resources to battle HIV, Blaine also expressed resentment that anyone would downplay the disease as merely a gay issue. “Everybody seems to be misinformed and they’re walking on eggshells because of the fact that it is supposedly ‘just a homosexual thing.’ But so what [if it is]?” she told MacRae, who agreed. The night of the Women Behind Bars performance, Blaine granted another live interview, this time to Channel 9 reporter Karen Long, right outside the theater, saying of HIV, “Something’s got to be done about it — it can’t be swept under the rug.” The evening was a triumph. At the curtain call, Eichler’s crew of “dames” were in place to make history in front of an audience that included such famous faces as Sheree North and Tippi Hedren, who came as paying customers to show support. MARC H / APRI L 202 2

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Actress Adele Jergens appeared in one of the earliest HIV fundraisers

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G EORG E RIN HART/G E T T Y IMAG ES

Actress Mamie Van Doren championed HIV causes in her later years

To tie in the prison theme, Eichler decided to bring all the ladies onstage after the performance and have Lu Leonard, playing a lesbian prison matron in the show, present them with souvenir skeleton keys. Eichler also recalled that one A-list Oscar nominee (and another Guys and Dolls alum) became a surprise guest. “Jean Simmons got up from her table and joined the end of the line on her own! When it came time, the matron said, ‘Here’s one of our ladies who made it in a big way!’ and Jean Simmons came out. So after seeing all these B-movie actresses, here was a bona fide movie star, and it just sort of capped the evening perfectly.” It may seem the least a celebrity can do — show up and walk across a stage — but these women in their 50s and 60s were truly among the first in Hollywood to do even the least, and seeing familiar favorites from the past was a shot in the arm to a fledgling humanitarian cause. “These ladies, they had faded,” Eichler recalls, “but just the fact that they were there — it was a mostly gay audience, and anybody that supported [HIV causes] at that time or attended a gay event, in a sense, they were supporting gay rights and gay people. They were heroines.” “This stroke of genius from Alan Eichler was a personal one,” Barr says, “not only to him, but to all of us, because most had either lost friends or knew others who were struggling with the disease. We were all proud to take part.” About $7,000 (nearly $22,000 in 2022 dollars) was raised for HIV causes that night. Eight years later, playwright Eyen died of HIV-related complications. Barr, who had also played the role of Cheri in the original production of Women Behind Bars, remembers, “I was devastated by his death. He kept his declining health a secret and was spending a lot of time in Florida. I was happy to be in denial, but that made it that much harder when I got the news from his boyfriend Martin Saffen, who later succumbed to this plague as well.” Perhaps inspired by having made a difference, Blaine continued her HIV work, donating all proceeds from her aptly titled 1983 album For You to the cause. Like so many stars of yesteryear, Blaine gamely submitted to an interview with inimitable cable gabber Skip E. Lowe (who directly inspired Martin Short’s Jiminy Glick) on Skip E. Lowe Looks at Hollywood to talk about the album and to explain why she’d donated all the proceeds to HIV causes. Oddly, she did the Q&A with Don Monte, an editor from National Enquirer, by her side. Monte pointed out that Blaine was “the first internationally known star who stepped forward in the name of AIDS, openly, and said, ‘Let’s raise some money for these people.’” “Well, somebody has to,” Blaine humbly said, as the people in the studio burst into applause. “Somebody has to start it, and I just wish there were a lot of people who were following in my footsteps…. But that will come.” H IVPLUS MAG .CO M

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wellness

COUNTING YOUR BLESSINGS RESEARCH SHOWS THAT TAKING A MOMENT EACH DAY TO FOCUS ON WHAT YOU’RE GRATEFUL FOR CAN IMPROVE YOUR OUTLOOK, HELP YOU BE MORE SUCCESSFUL, AND BUILD RELATIONSHIPS.

K ATERINA BOLOV TSOVA- PE XELS

BY GA RY M CC L A I N

W H E N L I F E G E T S challenging — or downright difficult, like it has been for so many over these past couple years — it may be hard to always “look on the bright side.” However, in addition to being good for your soul, psychological research has also provided solid evidence that gratefulness is good for your mental health. For starters, being grateful in the morning can help you to get through the day ahead with a more optimistic attitude. Gratefulness can also help you to create more positive relationships, as well as deepen relationships at home, work, or school. It also contributes to helping you feel more grounded. And gratefulness can build your resilience muscles — it strengthens your coping skills, and we can all use more resilience. What about you? It may be easy to make a big list of all the things in life you are grateful for. If so, good for you! But if this is one of those years when it’s a stretch to come up with that grateful list, don’t judge yourself. These are challenging times. Let me tell you something important about gratefulness: it’s a mindset, and you can choose to have a gratefulness mindset. Making the choice to be grateful can have a big impact on your life!

MARC H / APRI L 202 2

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MA XIMILIAN IMAG ING

Some ideas for making gratefulness part of your daily routine: • Stay focused on what’s possible. It’s all too easy to get caught up with what’s hard in life. If you need some help, just take a look at the daily news. Sure, we all have some bad days, but here’s something to consider: a disappointment or a setback is a blip on the radar screen of your life. It’s not all of your life. In other words, a bad day doesn’t mean a bad life. And a bad day makes us all that much more grateful on the good days. • Be grateful for the people in your life — and show it! Be more patient. More kind. More loving. Be willing to jump in and help by being a problem-solver — more “we” and less “me.” Be more open and trusting of the people you come into contact with every day. This will help them to be more open and trusting in return. It starts by saying: “I appreciate you. I’m grateful for having you in my life.” • When hit with a challenge, connect with your support team. Ask yourself: is this a chance to learn to work together better? To share our collective expertise? To learn from each other? To strengthen our bond as family members, friends, coworkers? Think back to situations that felt hopeless at first but left you feeling stronger, supported, better prepared for the next challenge — and grateful for the people who have your back. • Assess your progress. I’m not suggesting you should be grateful for a global pandemic, or any of the other challenges you have had to face in your life. However, having said that, I am grateful for the progress I have made during this difficult time. I suspect it’s the same with you — better able to tolerate frustrations and limitations, more creative, more patient, less demanding that everything go my way (learned during the first lockdown). Take a look at your personal growth over the years — another reason to be grateful. • Review your foundation. Make a list of your strengths, your accomplishments, your resources like health care, your support system. Keep it handy, on a notecard in your wallet, taped to your refrigerator, in your smartphone. Review it frequently, even daily, whenever you need a boost. Your foundation is there, rock solid. This is a great way to find your center when life throws another curveball — you’ll have a whole list of gratitude waiting. • Decide to be kinder. Take time to give other people compliments. Make it a point to say

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thanks for acts of courtesy and kindness in your daily life, no matter how small. Look for reasons to give compliments. And say “thank you” when someone compliments you. Own it, don’t brush it off. Make giving compliments a part of your daily interactions with people around you. Smile more, even if that means smiling first. Gratefulness is a boomerang, pass it around and sooner or later it comes back in your direction. Compliment other people for their strengths. When someone does well, your partner, your child, for example, focus on their strengths and how you or others benefited. Identify strengths in others. Get specific, e.g. “You’re really good at…” This encourages others to be grateful for their own gifts. Again, the boomerang thing. Start the day with gratitude. Take a moment every morning to identify something you are grateful for, big or small. The hot coffee, the sun shining through your living room window, your child’s beautiful smile. Nothing is too small to deserve your gratitude. And remember, this can have a major impact on your perspective for the rest of the day. Consider making gratefulness a group thing. Make an agreement with your partner to express gratefulness to each other every day. Get everybody in the family involved in sharing something they are grateful for every morning. Start a group text with your friends. This can become a habit over time, a daily ritual that increases the happiness at your house, or among your friends, and helps everybody to feel more supported. And end the day with gratitude. Spend a few minutes at the end of the day focused on being grateful. Identify reasons for gratefulness that occurred during your day. Think about the person who smiled and said “hi,” the compliment you received, the task you were able to get out of the way. Go to sleep feeling more calm, more optimistic. You will sleep a whole lot better than when you go to bed feeling frustrated. Remember: gratitude builds resilience! Practicing gratefulness enhances your coping skills. It helps you to stay focused on your strengths, your foundation, during those times when the going gets rough. Gratefulness helps you to maintain a positive attitude in the face of adversity and challenge!

So let’s get grateful, today, tomorrow, every day. Give it a try and watch your whole perspective on life change for the better!

Mental health editor, GARY MCCLAIN, PH.D., is a therapist, patient advocate, and author in New York. He specializes in working with those diagnosed with chronic and catastrophic medical conditions. (JustGotDiagnosed.com) H IVPLUS MAG .CO M

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parting shot

by n e al b rove r man

too, and I’m thankful for the friends and therapists who helped me through it.” If I want to help, I will also offer to share some information with them — like a website, article, or resource — or point them in a direction that would answer their questions. What’s right for me may not be right for you, though — and that’s OK. We each navigate the journey with our status in our own way to protect our well-being.

DIVERSITY EXPERT BRIAN MCCOMAK KNOWS FIRSTHAND HOW IGNORANT COWORKERS AND BOSSES CAN BE ABOUT HIV. HERE’S HIS ADVICE FOR WEATHERING HOSTILE SITUATIONS WHILE ON THE CLOCK. B R I A N M C C O M A K S P E N D S his days helping businesses look more like America — a true mix of races, genders, and identities — as founder and CEO of the consulting firm Hummingbird Humanity. McComak, whose book, Humanity in the Workplace: A Blueprint for Building an Inclusive & Equitable Company Culture, is set for release this spring, says diversity also includes those living with HIV, as he is. We connected with McComak on the uncomfortable process of coming out about your status at work and what to do when the reception is less than positive.

When you came out to friends and coworkers about your HIV status, you described the situation as stressful. What are some tips to make it smoother? I still remember the anxiety I felt about sharing my HIV status and the worrying about what others would think. It’s become easier to share my status with time, with experience, and with the work I’ve done in therapy. Secrets have power — I take away that power when I choose to share my status, particularly when I share it to help others. If I were to offer one suggestion — work with a therapist to find peace with your diagnosis. Through that work, you might even find strength in owning your story. What would you say to people who have irrational or unfounded fears after hearing about your HIV status? I’ll admit that I sometimes feel frustrated, hurt, or even angry when someone expresses their fears or concerns to me after hearing about my HIV status. I try to pause before saying anything and remember what it was like when I first learned about my HIV status. I was full of emotion — including fear, anger, disappointment, shame — and it took me time to process those emotions. I try to extend that grace to others and say, “It took me awhile to process this news 48

Your career and new book center on building inclusive workplaces. Why is that important? Creating humancentered workplaces that are diverse, inclusive, and equitable, and where humans thrive is both the right thing to do and it’s good for business. People are required for every company or organization to exist and to function. If your people feel included, valued, like they belong, and if they believe they are seen and heard, they will be more engaged and they’ll do their best, and often go above and beyond to contribute to the organization’s success. It’s also important to recognize that the demographics of the United States are changing and embracing diversity, which is often a driver for innovation and will be necessary [for businesses] to be competitive in the domestic and international marketplace. How are you keeping your mental and physical health strong during this difficult, confusing time? The pandemic has been a challenging time for most, if not all, of us. My mental and physical health have been impacted. Some days are better than others. There are those days I give myself permission to just “be” — which might be taking a nap or watching TV or eating my favorite food. I remind myself it’s OK to have a tough day. I’ve also tried to take active steps to ask for help and build community. I returned to talk therapy, hosted virtual game nights with friends, and started taking a daily walk with a neighbor. I also make a conscious effort to make my bed every morning and maintain my self-care routines in the morning and before bed. For me, taking small steps are the key to staying centered and taking care of my overall well-being.

COU RTESY B RIAN MCCOMAK

ONE TOUGH JOB

What should one do if their boss is hostile after discovering their HIV status? If your boss reacts adversely to you sharing this news, I’d first like to say I’m sorry and you’re not alone. It’s not OK for a boss, or coworker, to treat you differently because of your HIV status. In that moment, it can feel scary and, while you are definitely not alone, it can feel like you are. If you feel comfortable, it’s OK to say to your boss or colleague, “it hurt when you said that,” or “that doesn’t feel good to hear.” I also encourage you to write down what happened as specifically as possible, including who was there, what was said, the date and time, so you have it to reference later if needed. And ask for help — from your HR department, your company’s hotline for employee issues, the EAP (Employee Assistance Program), a trusted mentor, your therapist, or someone else in the HIV community.

MARC H / APRI L 202 2

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Callen-Lorde’s Rainbow Run is a 5K or 10K fun run/leisure walk promoting health and wellness while supporting the lifesaving work of Callen-Lorde Community Health Center!

May 7 - 14, 2022 New York City or anywhere

Learn more and sign up at callen-lorde.org/rainbowrun

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HOW DOES HIV TREATMENT WORK AS HIV PREVENTION Starting and sticking with HIV treatment every day helps lower the amount of HIV in your body. It can get so low it can’t be measured by a test. That’s undetectable. Less HIV in your body means it causes less damage. And according to current research, getting to and staying undetectable prevents the spread of HIV through sex. It’s called Treatment as Prevention. Or TasP for short. There’s no cure for HIV, but if you stick with treatment you can protect yourself and the people you care about.

Talk to a healthcare provider and watch It’s Called Treatment as Prevention at YouTube.com/HelpStopTheVirus

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