10 AMAZING PEOPLE LIVING WITH HIV BECAUSE YOU’RE MORE THAN YOUR STATUS
The Berlin Patient’s Love Story 30 Years of Red Hot + Blue Ending the Military’s HIV Ban
NOW WE’RE COOKING CHEF GABRIELE BERTACCINI OF SAY I DO IS TV’S TASTIEST HIV-POSITIVE ROLE MODEL
NOVEMBER/DECEMBER 2020 hivplusmag.com
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contents
I S S U E 139
ON THE COVER 30 AN ITALIAN AFFAIR It's easy to say "I do" to gay chef Gabriele Bertaccini who came out poz on his reality show.
FEATURES 16 BERLIN HAS FALLEN The first patient cured of HIV has died from cancer. 20 THE OTHER PANDEMIC World AIDS Day reminds us there is still no cure. 22 RED HOT + BLUE The iconic HIV awareness campaign celebrates 30 years. 36 AMAZING GRACE 2020's Most Amazing People Living With HIV.
COVER AND ABOVE: Gabriele Bertaccini photographed by Constance Higley
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What do you give a long-term survivor turning 60 who wasn’t supposed to make it to 30?
VIRTUALLY HAPPENING VIRTUALLY HAPPENING
WEDNESDAY, WEDNESDAY, DECEMBER 16 DECEMBER 16 A CELEBRATION OF LONG-TERM SURVIVORS OF HIV BENEFITING
THE REUNION PROJECT
FOR MORE INFORMATION OR TO REGISTER, GO TO:
MarkIs60.com
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CONTENTS
DAILY DOSE 10
HIV TREATMENT WORKS The CDC unveils a new HIV campaign stressing adherence.
BUZZWORTHY 12
SOLDIER KEEP ON MARCHING Service members fight Trump's HIV discrimination.
14
PARTY & PAY How a good time can help fuel the HIV pandemic.
15
MALPRACTICE A woman was denied her HIV meds in prison. It killed her.
41
WELLNESS 44 INSPIRE YOURSELF Finding inspiration to stay healthy in a crazy world.
TREATMENT 46 ON WHOSE AUTHORITY? What to know about prior authorization requirements.
BACK TALK
SE AN HOWARD
48 CONFESSIONAL Sex guru Alexander Cheeves reveals his kinks in a new book.
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QUEER TV 24 / 7
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chief executive officer & editorial director DIANE ANDERSON-MINSHALL
evp, group publisher & corporate sales JOE VALENTINO
editor in chief NEAL BROVERMAN
vp, branded partnerships & associate publisher STUART BROCKINGTON
EDITORIAL managing editor DAVID ARTAVIA editor at large TYLER CURRY senior copy editor TRUDY RING assistant editor DONALD PADGETT contributing editors KHAFRE ABIF, MARK S. KING mental health editor GARY MCCLAIN staff writer MEY RUDE contributing writers CHARLES STEPHENS, JEANNIE WRAIGHT ART executive creative director RAINE BASCOS interactive art director CHRISTOPHER HARRITY art associate DESIRÉE GUERRERO PRIDE MEDIA EDITORIAL editor in chief, the advocate TRACY E. GILCHRIST digital editor in chief, advocate.com NEAL BROVERMAN editor at large, the advocate JOHN CASEY editor in chief, out DAVID ARTAVIA digital director, out.com MIKELLE STREET editor in chief, out traveler JACOB ANDERSON-MINSHALL editor in chief, pride RAFFY ERMAC deputy editor, pride TAYLOR HENDERSON digital director, pride & senior editor, advocate.com DANIEL REYNOLDS director of podcasts & special projects JEFFREY MASTERS SALES & MARKETING executive directors, integrated sales EZRA ALVAREZ & PATTY AGUAYO director, branded partnerships JAMIE TREDWELL creative director, branded partnerships MICHAEL LOMBARDO senior manager, branded partnerships TIM SNOW junior manager, advertising & branded partnerships DEAN FRYN senior director, ad operations STEWART NACHT manager, ad operations TIFFANY KESDEN DIGITAL vp, technology & development ERIC BUI digital media manager LAURA VILLELA social media manager CHRISTINE LINNELL social media editor JAVY RODRIGUEZ PRINT PRODUCTION print production director JOHN LEWIS production editors JACOB ANDERSON-MINSHALL & DESIRÉE GUERRERO CIRCULATION director of circulation ARGUS GALINDO FINANCE/ACCOUNTING vp, finance BETSY SKIDMORE accounts receivable controller LORELIE YU accounting manager PAULETTE KADIMYAN 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 ©2020 by Pride Publishing Inc. All rights reserved. Printed in the U.S.A.
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EDITOR’S LETTER
B R ADFORD ROG N E
BY N E AL B ROVE R MAN
I N O C T O B E R , I experienced something I hadn’t felt in a long time: optimism. After a productive weekend of crossing numerous errands off my to-do list — and getting close to finishing this current issue — I experienced a wave of happiness and hope for the future. My reaction was bigger than me — the forthcoming election results appeared clearer, and the country and world looked to be turning the page on a dark period. Beyond politics, I also saw more and more people wearing masks and social distancing; it seemed like my neighbors and the public in general were ready to truly confront COVID-19, a pandemic that so devastated seniors and people of color and created no shortage of uncertainty and anxiety for people living with HIV. Whether new leadership and a concrete plan for ending COVID truly come to pass is anyone’s guess (at least at the time this issue went to press!), but I’m enjoying living in the possibility of it. Walking on a cloud of good faith feels infinitely better than the doom and gloom that consumed me and so many others these past eight months or so. For anyone seeking an “aha moment” of positivity, Gary McClain offers suggestions on finding your own inspiration (page 44) after it’s been dormant for so long. Personally, I was inspired by the story of the 30th anniversary of Red Hot + Blue, (page 22) the celebrity charity album that took aim at early ’90s HIV stigma, raised millions for LGBTQ+ causes and AIDS organizations, and spawned an effective public service campaign and several other related albums. The whole endeavor was begun by just two New Yorkers recruiting their pals to do something philanthropic, and they ended up changing the world. Meanwhile, our cover star, chef Gabriele Bertaccini of Netflix’s Say I Do, tries to live by the philosophy of focusing on the positive (page 30). Living with HIV has not slowed down this native Italian, who was raised to appreciate the simple joys of food, friends, and family. Then we have our 10 Amazing People Living With HIV (page 36), a group of admirable individuals working hard
to assist people in the community. It’s hard feeling sorry for yourself when you read stories of people like former sailor Kevin Deese — suing the Defense Department for anti-HIV discrimination — and Ashunte Coleman, who dusted herself off after an arrest and became a successful and respected advocate for sex workers and people living with HIV. The other eight individuals share similar stories of compassion and resolve. All these uplifting stories are not meant to gloss over the very real problems the world, and the HIV community, grapple with. Crystal methamphetamine continues to be a scourge (page 14) and private prisons are accused of denying inmates their livesaving medications (page 15). The beloved Berlin patient, Timothy Ray Brown, died this fall of cancer after being “functionally cured” of HIV (page 16). Even that story had a glimmer of light though — late in his life, Brown found love and was surrounded by it during his last days. Even as his body was giving out, Brown’s partner, Tim, made him comfortable and vowed to protect his legacy. Mark S. King’s beautiful story on the men shows Brown knew at the end of his life how much he contributed to HIV research and a potential cure — that he was leaving behind more than he was born into. It’s my hope for the coming holiday season that we disconnect from social media when it becomes too burdensome and think about the silver linings in our lives. The haze of political chaos and dual pandemics (COVID and HIV) have made them hard to see, but I promise they’re there if you look. Be well,
NEAL BROVERMAN EDITOR IN CHIEF
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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. 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. 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.
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:
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.
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.
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.
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.
Get HIV support by downloading a free app at
MyDailyCharge.com
BVYC0197_BIKTARVY_A_7-875X10-5_Plus-Nikki_r1v1jl.indd All Pages 19029 Biktarvy Keep Loving Nikki Plus 137.indd 2
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, DAILY CHARGE, the DAILY CHARGE Logo, KEEP LOVING, LOVE WHAT’S INSIDE, GILEAD, and the GILEAD Logo are trademarks of Gilead Sciences, Inc., or its related companies. Version date: February 2020 © 2020 Gilead Sciences, Inc. All rights reserved. BVYC0197 03/20
6/2/20 9:15 AM
NIKKI
KEEP LOVING.
LIVING WITH HIV SINCE 2008 REAL BIKTARVY PATIENT
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. See Nikki’s story at BIKTARVY.com. 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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D A I LY D O S E
TO LIVE AND THRIVE WITH HIV
virtually impossible to transmit HIV. Getting to an undetectable level is possible with regular adherence to meds, another big takeaway of the digital campaign. The CDC is also hoping to encourage newly diagnosed THE CDC UPDATES A SIX-YEAR-OLD people to get started on treatment and urge reconnection with CAMPAIGN TO REMIND PEOPLE WITH HIV medical providers for those THAT, WITH TREATMENT, LIFE IS GOOD. who have fallen out of care, either because of the COVID-19 pandemic or for other reasons. C E D R I C M OV E D TO North Carolina; Sharmain got “The goal of the updated resources is to promote married; Aaron had a baby boy. These real stories of the positive health outcomes that result from HIV people living with HIV are featured in the recently care and treatment, so that people with HIV are updated “HIV Treatment Works” effort, part of the encouraged to engage in care and adhere to their Centers for Disease Control and Prevention’s “Let’s Stop treatment,” according to HIV.gov. LET’S STOP HIV TOGETHER HIV Together” campaign. All the people featured in the updates were part of the original 2014 version of “HIV Treatment Works.” The new posters and messaging offer updates on these people thriving with HIV as well as emphasizing the importance of U=U, the concept that having an undetectable viral load makes it LET’S STOP HIV TOGETHER
“I’m here. you, HIV. But you will never, ever get the best of me.
“
“I was diagnosed with HIV when I was just 4 months old. As a mom, I’ve done everything in my power to take good care of my health and make sure my children are born HIVnegative. They’re my motivation every day.” — SHARMAIN FROM MEMPHIS, TENNESSEE
“
“I may have gotten
I’m living. I’m happy. So take that, HIV.
“It took me a while to accept that being HIV-positive is not the end. It’s the beginning of a new way of life. I worked with my doctors to find medicine that worked for me. Now I feel great and I’m undetectable.” — CEDRIC FROM CHARLOTTE, NORTH CAROLINA FIND A PROVIDER AND DISCUSS YOUR HIV TREATMENT OPTIONS TODAY.
cdc.gov/HIVTreatmentWorks
HIV TREATMENT WORKS. GET IN CARE AND STAY IN CARE SO YOU CAN LIVE WELL WITH HIV. cdc.gov/HIVTreatmentWorks
LEFT Sharmain shares her story as part of the CDC’s “HIV Treatment Works” effort ABOVE For the campaign, Cedric talks about being undetectable
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BY N E AL B ROVE R MAN
LET’S STOP HIV TOGETHER
?
ARE YOU READY FOR PrEP 101
PrEP Basics The word “prophylaxis” means to prevent or control the spread of an infection or disease
PrEP stands for Pre-Exposure Prophylaxis
BEING UNDETECTABLE MEANS FREEDOM. GET IN HIV CARE TODAY.
1
PIL
“When I found out I was HIV positive and started treatment, I didn’t know what to expect. But by taking my medication every day, I’ve become undetectable. It’s a great feeling knowing I cannot transmit HIV to anyone else.” — DIMITRI FROM ASTORIA, NEW YORK
Y
“
OGETHER
PrEP can help prevent you from getting HIV if you are exposed to the virus
PrEP is an HIV prevention option that works by taking one pill every day
IL
When I found out I was undetectable, everything changed.
L DA
cdc.gov/HIVTreatmentWorks
How Does It Work? In several studies of PrEP, the risk of getting HIV infection was much lower — about 99% lower — for those who took the medicines consistently than for those who didn’t take the pill Some of the same medicines prescribed for the treatment of HIV can also be prescribed for its prevention
“We can help stop HIV stigma one story at a time.” I wasn’t sure what to expect when I shared my story about living with HIV on social media. The outpouring of support has been amazing.
Let’s stop HIV stigma together. Learn how at cdc.gov/together
/ActAgainstAIDS
ABOVE Participants in the campaign stress the importance of adhering to their medication regimens and battling stigma, while the CDC provides the simple facts about HIV
/ActAgainstAIDS
W I TH M E DI C I N E
ABOU T
99% LOWER RI SK
When taken every day, PrEP can provide a high level of protection against HIV, but, only condoms protect against other STDs like syphilis and gonorrhea
S ID E EFFECT S
W I TH O U T M E DI C I N E
People who use PrEP should take the medicine every day and return to their health care provider every 3 months for follow-up and prescription refills
Some people in clinical studies of PrEP had early side effects such as an upset stomach or loss of appetite, but these were mild and usually went away in the first month. Some people also had a mild headache. No serious side effects were observed. You should tell your health care provider if these or other symptoms become severe or do not go away.
@TalkHIV
/StartTalkingHIV
/StartTalkingHIV
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JAKSON MARTINS/PE XELS
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BUZZWORTHY
350 The approximate number of service members diagnosed with HIV annually.
23 per 100,000
The rate of newly diagnosed HIV infections among service members tested in 2017. The Department of Defense’s Armed Forces Health Surveillance Branch
FIGHTING FOR HONOR
POZ SERVICE MEMBERS GET THEIR DAY IN COURT AGAINST TRUMP’S POLICY OF DISCHARGING THOSE LIVING WITH HIV. BY NEAL BROVERMAN
A
federal district court recently declined to dismiss a lawsuit from two service members discharged from the military because they are HIV-positive. Deese & Doe v. Esper will move forward, the U.S. District Court for the District of Maryland ruled in September. The lawsuit challenges the current policy of the Defense Department, which prevents service members with HIV from deploying outside the U.S. without a special waiver that is rarely granted. These policies hinder the advancement of HIV-positive service members and are used as reasons to discharge some of them, as plaintiff Kevin Deese claims happened to him. “I’m glad that I will get my day in court,” Deese, a onceaspiring naval officer, said in a statement (see page 42 for more on Deese). “It’s important that people with HIV be allowed to follow their dreams, including serving their country through military service. Some of the bravest, strongest, and smartest people I have ever met live with HIV, and our armed forces deserve to benefit fully from their resiliency and commitment to service, rather than being held back by outdated and prejudicial policies. There is not a job in the world that a person living with HIV can’t do. I hope that this case helps to reset expectations about what is possible for people living with HIV.” Lambda Legal, the Modern Military Association, and the law firm of Winston & Strawn are fighting on behalf of Deese and John Doe, the anonymous service member who is also part of the lawsuit. In its ruling, the U.S. District Court made clear the plaintiffs had standing to sue. “There is simply no basis to hold that officers must be free from HIV even if they are physically capable of service and would otherwise be able to deploy,” the ruling read. “The military’s policy of withholding officer commissions from HIVpositive service members renders those service members second-class citizens. That is precisely what the equal protection clause forbids.” There are two other separate lawsuits challenging the Pentagon’s discriminatory HIV policies that are also advancing through the courts. H IVPLUS MAG .CO M
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buzzworthy
THE SINGLE BIGGEST RISK FACTOR FOR GAY & BI MEN BECOMING HIV-POSITIVE
RESEARCHERS RING THE ALARM ON THE SCOURGE OF “PARTY AND PLAY.”
14
36 %
Proportion of “persistent” meth users who became HIV-positive in the year City University of New York researchers followed them
followed by Black ethnicity and a syphilis diagnosis. Researchers detailed the correlation between meth and HIV. Source: “The Crisis We Are Not Talking “Methamphetamine About,” published online by Journal exacerbates HIV risk via of Acquired Immune Deficiency increasing sexual libido Syndromes, July 22, 2020 while simultaneously reducing inhibitions,” the authors stated, according to AIDSMap. “Our findings highlight the need to address methamphetamine use and its associated risks among sexual and gender minorities, the likes of which may also serve to help end the HIV epidemic.” The full study was published online in July by the Journal of Acquired Immune Deficiency Syndromes.— N B
CH RISTIAN B U EH N ER /U NSPL ASH
Crystal methamphetamine use is the single biggest risk factor in American gay and bisexual men becoming HIV-positive, according to a new study. Researchers associated with the City University of New York queried nearly 4,800 people — almost entirely queer cisgender men aged 16-49 — in 2017 and 2018, recruiting them from gay dating apps. The participants began the study as HIV-negative and were not on PrEP, the preventative medication that makes it nearly impossible to contract HIV. The study’s subjects were initially asked about their meth use, and came in for HIV tests a year after they were first recruited. The results showed that 14 percent of participants who reported “persistent” meth use became HIV-positive over that year, while only 2.5 percent of study participants overall seroconverted, or 115 people. Researchers categorized “persistent” meth use as those who reported using the drug before and throughout the study. Of all those who became HIV-positive, over a third (36 percent) were persistent meth users. Men aged 36-45 reported the most meth use, and those living in Western states had the highest incidence of the drug. Persistent meth use is the biggest factor for seroconversion, researchers stated, N OVEM B ER / D EC EM B ER 2020
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buzzworthy
DEATH SENTENCE HIV-POSITIVE INMATE HOLLY BARLOWAUSTIN DIED IN A TEXAS FOR-PROFIT JAIL AFTER BEING DENIED MEDICATION AND WATER. NOW HER FAMILY IS SUING.
DESIRÉE GU ERRERO
BY TRUDY RING T H E FA M I LY O F an HIV-positive Texas woman has filed a federal civil rights lawsuit alleging that she was subjected to abuse and neglect at a for-profit jail, leading to her death. Holly Barlow-Austin, who died last year at age 46, was held in “deplorable and inhumane conditions of confinement,” which included denial of water and medications, according to the lawsuit, The New York Times reports. The suit names LaSalle Corrections, jail staffers, and Bowie County, Texas, as defendants. LaSalle Corrections, a for-profit company, operates jails and prisons in Arizona, Georgia, Louisiana, and Texas, including the Bi-State Justice Center in Texarkana, Texas, where Barlow-Austin was held. Barlow-Austin was arrested in April 2019 on a charge of violating the terms of her probation. Her HIV was wellmanaged with medication when she was taken into custody, as were her mental health issues, the suit says. But officials
at the jail did not administer her full medication regimen, and she became ill. By late May, she “could no longer walk or stand, and her vision was badly impaired,” according to the suit, filed in the U.S. District Court for the Eastern District of Texas. Barlow-Austin was placed in a medical observation prison cell in early June, then taken to a hospital June 11. She died June 17 of fungal meningitis. By the time she entered the hospital, her condition had deteriorated so much that it was too late to save her life, the suit contends. Video footage of her last days in the jail shows she was extremely weak and undernourished, and she was being denied sufficient water, the family’s lawyer, Erik Heipt, told The Washington Post. “The only way I was able to know, for example, that [Holly] only had three small cups of water during 48 hours is because I watched all 48 hours,” Heipt said. “If you look at just the medical records provided by the company, LaSalle, you would have no idea of her blindness, inability to walk, difficulty even crawling, or malnourished state.” Neither LaSalle Corrections nor Bowie County officials would comment to the Post or the Times. LaSalle has been accused of mismanagement in several cases; Heipt filed a suit in the 2015 death of Michael Sabbie at Bi-State. Sabbie, who had high blood pressure, asthma, and other health problems, did not receive the medical care he needed either, according to the suit, which was settled out of court in 2019. LaSalle also operates the Irwin County Detention Center in Ocilla, Ga., which is the subject of whistleblower allegations that immigrant detainees had undergone various gynecological procedures, including hysterectomies, without their informed consent. “For years, LaSalle has been neglecting and abusing inmates, disregarding their fundamental constitutional rights and engaging in other cruel and inhumane acts and practices,” the Barlow-Austin suit says, adding that her case “goes to the very heart of everything that’s wrong with the privatization of America’s county jails.” H IVPLUS MAG .CO M
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A Love SUPREME The last days of the “Berlin Patient” were filled with adoration and appreciation. BY M A R K S . K I NG
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B REN DAN SMIALOWSKI/AFP/G E T T YIMAG ES
Timothy Ray Brown announcing the formation of the Timothy Ray Brown Foundation to increase efforts to cure HIV
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The harrowing details of Timothy’s medical journey, as a cancer patient and a man living with HIV, are complicated. Suffice it to say that, while Timothy was living in Berlin in 2008, an ingenious oncologist treated Timothy’s leukemia with a stem cell transplant using a rare blood type that is genetically resistant to HIV infection. When all was said and done, HIV was no longer found in Timothy’s blood and the scientific breakthrough was celebrated around the world. The treatment, it should be noted, nearly killed Timothy and has been successfully replicated exactly once — but has nevertheless provided vital insight into potential avenues of HIV cure research. But that was years ago, and Timothy’s traumatized body has never been the same. Sadly, his health has been in freefall for the last six months, with a recurrence of leukemia that has invaded his spine and brain. His partner, Tim, the Scruff date from Nevada, has never left his side. That is no overstatement. When Timothy was admitted to a cancer hospital in April, Tim camped in Timothy’s hospital room for seven weeks. Because of COVID-19 restrictions, neither of them could leave the medical campus. “It was a blessing to be there with him,” Tim tells me, “but it was rough. It’s so much better to be home.” There is a hospital bed in the onebedroom apartment Tim and Timothy share. Timothy is bedr idden, and is receiving home hospice care. Tim divides his time between caring for Timothy and fielding calls from concerned friends as well as from various researchers to whom Timothy has generously provided endless blood and tissue samples over the years.
COU RTESY MY FAB U LOUS DISE ASE
n September 29, Timothy R ay Brow n—t he f i r s t person doctors say was “functionally cured” of HIV—died at his home in Palm Spr ings, Calif. It was leukemia, not HIV, that ultimately felled Brown. The man known as the “Berlin Patient” was battling cancer for decades; a stem cell implant to treat the disease allowed his body to defeat HIV. Days before Brown passed, Mark S. King of My Fabulous Disease spoke with Brown’s loving partner, Tim Hoeffgen, about this incredible journey: Tim Hoeffgen did a quick Google search of his Scruff date as he headed over to meet him. Tim was living in Nevada in early 2013, and the guy he had been chatting with on the dating app looked a lot like the man who was on the cover of the LGBTQ newspaper in Las Vegas that week. When the door opened, Tim realized his hunch was correct. Greeting him was Timothy Ray Brown, the f irst man in history cured of HIV and the intense focus of scientific and public fascination around the world. “I was charmed immediately by his personality,” Tim tells me in a call from their Palm Springs apartment. “He is just the sweetest man.” The two men, Tim and Timothy, have been together ever since. Timothy Ray Brown is terribly shy. He also exudes warmth and humility, and is clearly grateful for his viral reversal of fortune. He is quite literally an HIV historical milestone, embraced by the community since he was identified as “the Berlin Patient” at the International AIDS Conference in 2012. N OVEM B ER / D EC EM B ER 2020
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COU RTESY MY FAB U LOUS DISE ASE
LEFT Timothy R. Brown (on right) after being cured of HIV, with his partner Tim Hoeffgen RIGHT Hoeffgen feeds Brown at their home
“Timothy is not dying from HIV, just to be clear,” Tim says. “HI V has not been found in his blood stream since he was cured. That’s gone. This is from the leukemia. God, I hate cancer.” Tim is speaking on the phone with me only a few feet from where Timothy is resting in his hospital bed. Tim sounds exhausted, and resigned to what lies directly ahead. “ The hardest par t has been seeing Timothy go downhill,” Tim says, bursting into mournful tears, the kind that strike without warning, even before the death we are awaiting has occurred. “He’s a person you can’t help loving. He’s so sweet. The cancer treatments have been rough. Sometimes I wonder if it’s worse than the disease.” Indeed. Many of my friends lost to AIDS would agree with him. “Believe it or not,” Tim adds, “this is the first time in my life that I will lose someone…” His composure breaks again. Tim and I both know that his partner, confined to his bed and surrounded by medical dev ices, bears an unsettling resemblance to a man dying of AIDS. It’s as if the Fates vengefully swept in to claim the AIDS patient who had escaped them. Timothy has dutifully fulfilled countless media requests and event invitations over the years, becoming a very active public figure in the HIV/AIDS arena in spite of his social reluctance. Tim has been his loving guardian, intervening as necessary to be sure Timothy wasn’t overwhelmed by requests. He has played the role of media agent and even bad cop in order to safely buffer Timothy. I ask Tim if Timothy knows he is dying. “Yes, he knows,” Tim answers. “Well, sometimes he doesn’t. It depends. But I have asked him what he wants me to tell people
when we make his situation public. He said, ‘Tell people to keep fighting. Fight for a cure for HIV that works for everyone. I never wanted to be the only one.’” Tim Hoeffgen now joins a unique group: the surviving partners of those with an elevated place in history. He will probably be known as the widower of Timothy Ray Brown for the rest of his life. “I would be honored to be known that way,” Tim tells me. “I love him so much. I will gladly carry his message and his legacy.” Our time on the phone is growing short, and I know Tim has things to do. I begin to wrap up our call when suddenly I hear Timothy’s voice on the line. “Hello there, Mark,” Timothy says. “I hope you are doing okay.” I tell him I am. I am tempted to thank him for all he has done, as a kind of goodbye, but it feels too intrusive. Instead, I tell him to fight for as long as he wants. In other words, no longer than he wants. “I’m going to keep fighting,” Timothy replies, “until I just cannot fight anymore.” Tim takes back the phone, and I can tell he is stepping away from Timothy as he quietly confides one last thing. “One of the researchers wanted Timothy’s body, you know, to be left to science,” Tim tells me. “I said, ‘thank you, but no. I think he’s done enough.’”
Contributing editor Mark S. King is the writer and activist behind My Fabulous Disease, where this originally appeared. H IVPLUS MAG .CO M
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WORLD AIDS DAY IS MORE RELEVANT THAN EVER The global coronavirus pandemic has been a stark reminder that HIV hasn’t gone away, and nearly four decades later, there’s still no cure or vaccine. But undetectability is starting to change the game.
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THIS YE AR HAS seen the world grapple with a new pandemic, but World AIDS Day, observed December 1 every year since 1988, is a reminder that an earlier one hasn’t gone away. Approximately 1.2 million people in the U.S. are living with HIV today, according to the Centers for Disease Control and Prevention, based on 2018 data, the most recent available. The CDC estimates that 14 percent of Americans living with the virus, or one in seven, are unaware they have it and therefore not accessing treatment. Early treatment is key to preventing progression to a diagnosis of AIDS, also referred to as stage 3 HIV, marking a serious compromise of the immune system. With treatment, a person with HIV can have a normal lifespan. But despite the successes there remains no cure or vaccine. Annual HIV diagnoses are down to about two-thirds of where they were at the height of the epidemic in the mid-1980s, but progress in reducing the virus’s spread has stalled in the past few years. There were about 36,400 new HIV infections in the U.S. in 2018, and from 2014 to 2018 the average annual number of new infections was about 38,000. The U.S. government in 2019 set a goal of reducing new HIV infections by 75 percent in five years and by 90 percent in 10 years. “The latest estimates indicate that effective HIV prevention and treatment are not adequately reaching those who could most benefit from them, and certain groups such as men who have sex with men (MSM), transgender persons, AfricanAmericans, and Hispanics/Latinos continue to be disproportionately affected,” HIV.gov notes. “Additionally, the highest rates of new HIV infection continue to occur in the South.” Gay and bisexual men, and other MSM (no matter how they identify) accounted for 69 percent of new HIV diagnoses in the U.S. in 2018. When new diagnoses were broken out by race and ethnicity (for the entire population, not just MSM), African-Americans accounted for 42 percent of new diagnoses, although they represent 13 percent of the overall population. Latinx people accounted for 27 percent of new diagnoses and 18 percent of the population. About three-quarters of people diagnosed with HIV as of 2018 had received some care, 58 percent were retained in care, and 65 percent had achieved viral suppression or had an undetectable viral load — a key to staying healthy and no longer being able to transmit HIV to someone else.
Worldwide, 38 million people are living with HIV, according to UNAIDS, which estimates 19 percent of them have not been tested. As of the end of 2019, 67 percent of people with HIV around the world were receiving antiretroviral treatment, meaning one-third were still waiting. The vast majority of people with HIV worldwide are in low- and middle-income countries. But deaths associated with the pandemic are dropping. Around the globe, AIDS-related deaths have been reduced by 60 percent since peaking in 2004. In 2019, around 690,000 people died of AIDS-related illnesses, compared to 1.1 million in 2010, UNAIDS reports. UNAIDS’s 90-90-90 goals set as targets that 90 percent of all people with HIV around the globe would know they have the virus, 90 percent of those living with the virus would be on antiretroviral treatment, and 90 percent of those on treatment would have achieved viral suppression. As of 2019, the world was not on track to meet those targets, instead coming in at 81 percent, 81 percent, and 88 percent respectively. While both American and global plans for reducing HIV are ambitious, World AIDS Day is a reminder that we need to reach even higher and do a better job targeting communities most at risk. Since 2012, the multiyear theme for World AIDS Day has been achieving zero new HIV infections, zero deaths from AIDS-related illnesses, and zero discrimination. Although COVID-19 is disrupting efforts to combat HIV, we do have some essential weapons in our arsenal. PrEP can prevent someone from contracting HIV even if they are exposed to it, and U=U (undetectable equals untransmittable) is the k nowledge that those who reach undetectable levels can no longer transmit HIV to someone else. No longer being able to transmit the virus not only helps stop its spread, but it can derail the stigma that has made fighting HIV more difficult. What can you do? If you are living with HIV, take your treatment regimen as prescribed so you can reach undetectability; stay informed about treatment and prevention advances; and share that knowledge with others. If you are HIV-negative, take steps to stay that way. Make sure you’re well-informed about advancements around HIV treatment, fight stigma by sharing the news about undetectability, and consider going on PrEP as further protection. Speak out against HIV discrimination and, if you have the means, donate time or money to an HIV service organization — especially during these difficult times. And show up, in person or digitally, for one of the World AIDS Day events. H IVPLUS MAG .CO M
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HOT R D E R ONE OF TH EV EW I OR S LD ER
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COU RTESY RED HOT + B LU E
These albums raised millions for HIV charities
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Debbie Harry & Iggy Pop for Paco Rabanne, 2015
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F O R P O P C U LT U R E - O B S E S S E D Gen Xers and older millennials, the name “Red Hot + Blue” conjures up images and sounds from legendary artists like Sinead O’Connor, Madonna, Keith Haring, and George Michael. The Red Hot albums, videos, and posters still resonate so strongly because they were some of the first to successfully make condoms and HIV education sexy to the MTV generation. Over the course of three decades, the nonprofit Red Hot Organization raised tens of millions for HIV and LGBTQ+ groups through sales of 20 Red Hot albums, some of which included videos from world-famous directors like Jim Jarmusch and Jonathan Demme. The organization also launched a public service campaign in 1992, utilizing famed photographers like Bruce Weber and Steven Meisel to shoot naked couples (opposite- and same-sex) in an effort to spread the word that “Safe Sex is Hot Sex.” To celebrate the 30th anniversary of their first album — the iconic Cole Porter collection, Red Hot + Blue — the Red Hot Organization is reissuing five Red Hot albums and six never-released remixes of Neneh Cherry’s much-loved version of “I Got You Under My Skin” from that first album. For an organization that persuaded the biggest names in entertainment to contribute their time and talents to their cause, N OVEM B ER / D EC EM B ER 2020
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Red Hot + Blue’s 1992 HIVprevention campaign
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LEFT British singersongwriter George Michael performing on stage, 1988
BARRY KING/ WIREIMAG E
ABOVE Annie Lennox performs at the Palace in Los Angeles
Red Hot is a relatively modest operation. Entertainment lawyer John Carlin and his friend Leigh Blake came up with the idea to raise money for HIV causes by involving some of their illustrious friends. “I was an art writer, curator, and teacher in the New York art world during the 1980s and became friends with a number of amazing visual artists who inspired me by their activism,” Carlin tells Plus. “Sadly, some of them, such as David Wojnarowicz and Keith Haring, got sick and eventually died from HIV/AIDS.” Getting the nascent project off the ground was not easy, Carlin recalls. “There was no initial funding,” he says. “I gave Leigh money out of my own pocket so she could afford to work on and produce the project. We eventually brought on a record label and film production company, both of which dropped out along the way, and we had
to scramble to replace them while the project was taking off. The label recording fund and pre-sales to ABC, Channel 4 in the U.S., and worldwide sales through Canal+ provided the money to record the tracks, make the videos, and long form TV program.” Carlin and Blake thought songwriter and composer Cole Porter was the perfect person to center the first CD around and they named the album after Porter’s musical, Red, Hot and Blue. “Cole Porter was the original creative spark — songs by a closeted gay man that your grandmother loved — that became the perfect foundation for both the first successful tribute album and one dedicated to AIDS awareness and LGBTQ rights,” Carlin says. With the world still drowning in HIV misinformation and stigma, Carlin and Blake initially struggled to sign on artists. Blake’s friendship with The Talking Heads’ H IVPLUS MAG .CO M
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project related to the opioid crisis that began last year, but has been postponed due to the current pandemic,” Carlin laments. Still, the organization is relishing its anniversary and the public’s opportunity to get reacquainted with Red Hot’s music, videos, and charitable legacy. “From the start we wanted Red Hot to raise money by creating and selling products, mainly albums — and used related creative activities such as album packaging, videos, TV special, designs, posters and digital media to do good propaganda to promote safer sex, awareness of AIDS in communities of color around the world and LGBTQ rights,” Carlin says. C a rl i n’s old f r iend s , Ha r i ng a nd Wojnarowicz, would be proud. Reissues of Red Hot + Blue, Red Hot + Bothered, Offbeat – A Red Hot Sound Trip, Silencio=Muerte: Red Hot + Latin, and Red Hot + Indigo are available October 23.
ABOVE Sinead O’Connor performs in Amsterdam, March 1988 RIGHT Madonna performs on stage in Kobe, Japan, April 1990
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lead singer David Byrne eventually led to a breakthrough — Red Hot + Blue’s first confirmed artists. Booking Annie Lennox, U2, Iggy Pop, and Deborah Harry for the album was made a bit easier thanks to The Talking Heads, but Carlin says it was a “long hard process.” The work paid off — the album, released in September 1990, featured 20 songs, with 20 accompanying videos. The album sold over a million copies, launched a TV special, and kicked off a series of themed Red Hot albums, including Red Hot + Dance, Silencio=Muerte: Red Hot + Latin, an indie rock collection, and a Duke Ellington tribute album. Red Hot continued to regularly release music, with 2016’s Grateful Dead-themed collection, Day of the Dead, their most recent. Carlin acknowledges the music industry’s diminishing album sales have forced the organization to rethink their business model. “We were fortunate to receive a grant from Open Society [Foundation] recently to do a N OVEM B ER / D EC EM B ER 2020
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LOVE, e l y t S tI alian Chef Gabriele Bertaccini of the Netflix series Say I Do hasn’t let HIV keep him from a beautiful life. And he wants the same for you.
CONSTANCE HIG LE Y
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“It was a moment that was very magical,” Bertaccini continues. “[Marcus] showed me the importance…of opening up and not being afraid of unpacking our baggage, of being who we are, of telling people about what has happened to us, and being able to do so with somebody that answers you back in the same way and holds space for you and your story…. We have to have a conversation. We have to be open about it. And most importantly, we have to acknowledge our self-worth. We cannot be ashamed of our stories.” Before he won us over with his authenticity and charm on Say I Do, Bertaccini was busy traveling the world, studying his craft, and eventually launching a successful catering and event planning businesses. Born in Florence, Italy, Bertaccini trained at the Buontalenti Institute of Culinary Arts and Management and worked in restaurants across Italy before relocating to the U.S.
CONSTANCE HIG LE Y
hen chef and caterer Gabriele Bertaccini (known to most simply as Chef Gabe) accepted the plum position of culinary expert and event planner on Netflix’s reality wedding series, Say I Do, he had absolutely no plans to disclose his HIV-positive status on international television. But that’s exactly what he did — and on the very first episode, no less. “I c a ll it my second coming- out ,” Bertaccini, who’s gay, says of the beautifully genuine moment, which was born out of a conversation between two men simply discussing their individual health issues. “My second coming-out, in that moment to Marcus [the groom-to-be in the episode], was in response to his own vulnerability in opening up about something that clearly affected his life, and it’s very intimate.” In that moment, Bertaccini realized he not only had an opportunity to bond with and support a fellow human being, he also had the chance to deal a powerful blow to the enduring stigma around HIV. “I realized in that moment that it could only have been matched by me with the same amount of authenticity and openness,” says the handsome and heavily tattooed 34-year-old. “It felt that there was no other choice for me to respond than by sharing with [Marcus] that we have a lot in common. The diagnosis might be different — it’s type 1 diabetes for him. It’s HIV for me. But the feelings of insecurity, of fear, of the lack of self-worth, the stigma that comes with it — it’s the same. Those things are the same.” Bertaccini was also inspired by Queer Eye star Jonathan Van Ness, who spoke publicly about his positive status last year. N OVEM B ER / D EC EM B ER 2020
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He first spent time in Arizona, where he earned degrees in journalism and public relations from Arizona State University. In 2008, he started his first catering business, Il Tocco Food. Known for its authentic, multicourse Italian style meals, Il Tocco has enjoyed enormous success across the American Southwest. When the conversation returns to “Firenze” (Florence in Italian), it’s apparent Bertaccini still holds his homeland close to his heart. “It’s probably one of the most beautiful cities in the world,” he says, admitting he didn’t fully appreciate it as a boy. “When you
live a reality, it’s difficult to also be aware of how special and magical the reality is because you become used to it. It’s only really when I left [at 19 to study abroad]…that I really felt it in the heart. I was like, Oh, my God, I’m missing it so much. Why?” “I realized how magical that place is, how it’s basically an open-air museum that’s inspiring everywhere you look,” Bertaccini continues. “It could be a corner of a street or… an older grandmother peeking through the window. It could be the smell, the sound of the church bells going off every 30 minutes. There is a magic that comes through the
BERTACCINI PLANS A COUPLE’S BIG DAY
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We have to have a conversation. We have to be open about it. And most importantly, we have to acknowledge our self-worth. We cannot be ashamed of our stories.
BERTACCINI MAKING DREAMS COME TRUE
ritual of life. Every little thing that you hear, you taste, and you smell, it’s part of that magic. It’s a movie that happens every single day…. I try to go back as much as I can.” Still, coming to America had always been the ultimate goal. “I always had this American dream in mind,” Bertaccini says. “I grew up with a father who was very supportive of that — my family, my mom too — but my father especially. I think one of his earlier dreams as a teenager was to live in America, come here and immigrate, and he couldn’t do it because…his father died in war, so he had to take care of the family. He had two sisters and the mother. He didn’t have the funds to come…. I think he lived his own dream in me. I definitely never felt pressure doing it because it felt such an even greater gift to be able not only to live this for myself but also to live this for him. It was very beautiful.” These days, Bertaccini splits his time globetrotting between Arizona, New York, California, London, and Italy, but when we caught up with him, he was sheltering in place in the Los Angeles area. In fact, the self-described “doggy daddy” and avid surfer said he had big plans to catch some waves later that day. “I’m lucky. I’m fortunate that I live in Venice, right on the ocean, on the sand. I’m looking out as I’m speaking to you, and the waves look quite beautiful…. I’m a master in doing a little bit of everything,” Bertaccini says of his very Italian way of life. “So I’ll jump in the ocean, then come back to a little bit of work, then take a little nap. It’s the yin and the yang.” The fact that he holds to this philosophy is no accident. Bertaccini says he works to stay conscious of this balance and not get sucked into the workaholic American way of life — which can be especially challenging, he says, in the entertainment industry. “One day I read this quote, I think it was [in] a book, actually. It said in the States, we work towards retirement…and we work hard because then we’re like, ‘We’re going to take this very big chunk of our life [to work], and then we’re just going to relax.’ Well, it’s actually important to take mini-retirements in your life. It’s a little bit of everything. In Italy, we do that often. You do a month and a half of vacation every year.” Bertaccini also admits that before signing on with Say I Do, which premiered in July on
Netflix, he didn’t have plans to join the ranks of celebrity TV chefs and had turned down such offers before. “I had five different people in a span of two weeks telling me about this casting…. At first, I was like, ‘Yeah, sure, just give them my email and we’ll figure this out.” And then, after the third, fourth person was telling me about it, it was basically like the universe crying, ‘Hey, here you go! Believe me.’” The feel-good show from the creators of Queer Eye features Bertaccini helping to create idealized wedding experiences for eight diverse couples, one per episode. Bertaccini, interior design expert Jeremiah Brent, and fashion designer Thai Nguyen, oversee inspirational ceremonies that are less about showing off and more about celebrating love, friendship, and commitment. The show just felt right for Bertaccini. “I had the chance of doing TV before,” he continues. “It was never really a fit for what my philosophy in food and wine is or what I do in life and what I think about life…. It felt very disingenuous, anyway, not authentic…. And then, Say I Do came along and it felt right. They approached me…and then, of course, I fell in love with the project…. If I can use my skills of being a crazy chef through something like that — and help other people to not only really enjoy a beautiful meal but understand a little bit more about what makes life precious, then why not? It was a beautiful project.” As for what his future holds in this uncer tain world, Ber taccini remains characteristically optimistic, despite the dark times. “I try to live in the present as much as I can,” he says. “I also try to enjoy the product of our efforts that we have put into the production of Say I Do. I think it’s very easy, especially in the Western world, always to achieve something and then be like, All right, moving on. What’s the next thing? and not be even able to savor it. It’s like if I gave you a beautiful plate of pasta that you have been craving all your life. Now you’re like, OK… what’s the main course? What’s next? I’m trying to enjoy this as much as I can and pay respect to the process and to the people that really work hard behind it.” After further ref lection, Bertaccini concludes, “Hopefully, [the future] will hold amazing food! Hopefully, it will hold the ability to create spaces all around the world for people to come together and not only experience amazing food and wines but just basking in the beauty of life and the understanding that there is so much more than just working, working, working all the time — that we should fall down sometimes, and we should just really connect on a deeper level.” H IVPLUS MAG .CO M
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TEN AMAZING PEOPLE LIVING WITH HIV THE HEROES LEADING THE FIGHT FOR RESOURCES AND BATTLING AGAINST STIGMA.
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ASHUNTE COLEMAN WOMAN WARRIOR
OPPOSITE: HARNOOR- DHALIWAL /U NSPL ASH; COU RTESY COLEMAN
THIS SURVIVOR IS FIGHTING FOR THOSE SO OFTEN LEFT BEHIND — BLACK TRANS SEX WORKERS LIVING WITH HIV.
ADVOCATING FOR THE most marginalized people in society is no easy job, but Ashunte Coleman is up to the task. As the founder of the Florida organization LIPS Tampa, Coleman offers help to sex workers and Black transgender women, providing food, condoms, needle exchanges, health information, and a shoulder to lean on. Working with the Sex Worker Outrea ch Projec t , C olema n ho s t s we ek ly work shop s a nd empowerment groups. Coleman’s job is complicated by current realities, including the existence of SESTA/FOSTA, the 2018 federal law that made it virtually impossible
for sex workers to screen potential clients online, forcing many back to the streets to f ind work. On top of that, COVID-19 has made street work — and the outreach by Coleman and activists like her — far riskier. Coleman pushes through the challenges, partly because her mission is so personal. Twenty years ago, Coleman was facing life as a Black transgender woman with a felony conviction; survival sex was the only work she could find. Later, before finding her groove in advocacy, Coleman worked in restaurants and as a certified nurse’s assistant but was often forced to supplement her income with sex work. There are few people who empathize with or offer help to sex workers, Coleman realized, so they must rely on each other. “I’ve always advocated for sex workers and [people with] HIV, mainly because all of my friends were either one or the other or both,” Coleman says. “Later, after my time in the Florida prison system, I began to take my role very serious and align myself with transgender males and females that were advocates and leaders in the LGBT community.” These people, Coleman says, became her mentors. Our community is lucky she is now passing on her own knowledge and fulfilling her passion for helping others. Amid all her work for sex workers and people living with HIV, Coleman is also a member of the Florida Rights Restoration Coalition, a group working to restore voting rights to Floridians with felony convictions. “There are many intersections I cross being the trans woman I am,” Coleman says. “Our struggle is hard, and every day I try to lessen the load by doing the work I do.” — N E A L B R OV E R M A N H IVPLUS MAG .CO M
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GONZALO ABURTO LATINX ORGANIZER FINDING FEW HIV RESOURCES, HE ACTIVATED HIS LATINX COMMUNITY.
GONZALO ABURTO IS a ma n on a mission. That’s nothing new for this longtime activist. Whether the New Yorker is tackling issues of health and prevention within his community or simply living positively with HIV, he doesn’t back down from a good fight. Aburto has been on the front lines of the fight against HIV/AIDS since the 1980s. While scientific advances and societal change have made it possible to live longer and better lives with HIV, many in the country — especially marginalized communities like immigrants and people of color — are still lagging behind in prevention, diagnosis, and treatment. This is especially true for the Latinx community. “After almost 40 years in this epidemic, little has changed for us,” Aburto says. “We are facing all the same things now that we faced at the beginning.” Aburto has been a decades-long witness to the Latinx community’s inability to access the same level of resources and care as the larger population. This is especially true for recent immigrant and refugee populations who find
themselves in a new environment. Even for resident populations, there can still be obstacles to the most basic HIV education and prevention because of language barriers and scant resources. The intersectionality of racism and health care is even more acute for queer members of the community. It’s for these reasons Aburto recently co-founded Latinx+, a Pennsylvania-based LGBTQ+ support group that seeks to draw on the expertise of those who have already been working on the ground within these neglected communities. “We’re trying to call attention to this situation, to see if we can work out our own agenda based on the experiences that we have, and the work that every one of us has done,” Aburto says. Aburto comes from Mexico and is representative of the diverse composition of the group, members of which hail from up and down the Americas. “We think we have something to say, and we want to be sure our ideas, our proposals, and our needs are taken into consideration with the people who decide where policies and resources for these programs are going,” Aburto says.— D O N A L D PA D G E T T
MARC MALKIN WAS always comfortable ceding the spotlight to Jennifer Aniston and Nicole Kidman. As a longtime red carpet reporter and the current senior culture CELEBRITY INFLUENCER and events editor at Variety, Malkin has interviewed the world’s biggest celebrities, THIS JOURNALIST PUSHED letting them share their thoughts, causes, THROUGH DISCOMFORT and projects with his readers. But Malkin TO SHARE HIS STORY OF began wanting people to know his story, SHAME AND SOBRIETY. hoping his journey could inspire others. First, Malkin took part in the 2018 AIDS Life/Cycle, the annual San Francisco to Los Angeles bike ride that raises millions for HIV causes (canceled in 2020 due to the pandemic). Malkin posted a photo of himself and husband Fabian on the charity ride, telling his tens of thousands of Instagram followers, “I have something to say for the first time in such a public forum — I am HIV-positive. In short, I lived much of my 30s in confusion, depression and a search to find myself.... I struggled with crystal meth. I was diagnosed with HIV about nine years ago. Today, I am sober.” “I call crystal meth addiction our second epidemic after HIV/AIDS,” Malkin tells Plus. “We have fought for so much and for so long — we have to stop destroying ourselves.” Being so open initially felt uncomfortable for Malkin, but last year, he came out again in an op-ed for Variety, speaking about his undetectability and sharing how newly-diagnosed folks have reached out to him. “I wanted to show gay men — especially young gay men — that HIV is not a death sentence, that life goes on after your diagnosis,” Malkin says. —N B
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LARRY SCOTTWALKER STAR OF THE SOUTH
COU RTESY SCOT T-WALKER
MEET A MAN INSPIRING AND UPLIFTING SOME OF THE MOST MARGINALIZED AMERICANS.
GROWING UP IN a religious community in Atlanta, Larry Scott-Walker listened to stigma preached from the pulpit. “Men who love other men are going to hell,” he heard. Since then, he’s learned how to fight back against that kind of stigma. He gained that knowledge after testing positive for HIV and then working with other HIV-positive Black men as a program manager leading support groups in Baltimore and Atlanta. He didn’t stop there. Scott-Walker also took the fight against stigma public by co-founding THRIVE SS with Dwain Bridges and Daniel Driffin in 2015. The nonprofit, based in Georgia, with branches in Tennessee, California, South Carolina, North Carolina, and Washington, D.C., provides both in-person and 24/7 online peer support services for those living with HIV. THRIVE SS, which stands for Transforming HIV Resentment into Victories Everlasting Support Services, initially started as a Facebook group. Now, in the Atlanta metro area alone, Thrive SS counts nearly 1,000 Black gay and bi men and 250 Black women as members. It has more than 3,500 members nationwide. Beyond hosting events and connecting members to health services, housing, and employment, Thrive SS provides a network where Black people can share their stories, advocate for one another, and collectively fight stigma. Outrun the Sky, the organization’s film, documents the difficulties Black gay and bi men face and is, ScottWalker told Plus, an effort to “rewrite the narrative of what it means to be Black, queer and living with HIV.” “I hope that my work will inspire Black same-gender loving men to love their full selves. To see that we are more than what our oppressors have put us through, and that we belong to a rich resilient community,” he said. — DA N I E L R E Y N O L D S H IVPLUS MAG .CO M
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HAROLD BROWN JUST GETTING STARTED
THIS SEPTUAGENARIAN REFUSES TO STOP FIGHTING FOR US.
AIDS Conference, for which Brown held virtual meetings throughout. Carrie Foote, chair of the HIV Modernization Movement-Indiana, describes Brown as a tireless social justice activist working for people of color, the LGBTQ+ community, and those living with HIV in Indiana. “Harold is a long-term thriver living with HIV who has been an advocate making a positive difference in the lives of people living with HIV in our state for decades.” Foote tells Plus. Now in his 70s, Brown refuses to slow down. “My life looks very different today from what it did when I first became sick with HIV,” Brown says. “Life has been full of opportunities, experiences, and tragedies. There is still both racism and stigma out there, but I will continue to fight as long as I live.”— D E S I R É E G U E R R E RO
“MY ADVOCACY FOR the elimination of HIV/ AIDS came into being from the moment of the first person who died in my arms in New York City, in 1978,” Harold Brown wrote of witnessing the earliest days of the epidemic while studying for his doctorate in the city. “I saw my own death through the lives of the many persons who [were] suffering from the lack of care; a failing response that denied our humanity.” Since those dark days, the now-retired professor and current community scholar at Indiana University-Purdue University Indianapolis has devoted his life to helping others, especially others living with HIV. Brown has served on numerous HIV organization boards over the years and steered countless events and delegations in his community — most recently for this year’s International
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DEVIN HURSEY PLACING A SEAT FIRMLY AT THE TABLE BLACK PEOPLE LIVING WITH HIV MUST HAVE A SAY IN THEIR CARE, SAYS THIS ACTIVIST. AT A N AG E when most people are still figuring
SE AN HOWARD (JOH NSON); TIMOTHY LOVE (H U RSE Y )
out what they want to do with their lives, Devin Hursey is changing lives. After graduating two years ago from the University of Missouri, Kansas City, Hursey is pursuing dual master’s degrees in public health and strategic communications at the University of Missouri. Preiously, Columbia worked as a peer educator at Truman Medical Center in Kansas City, helping people living with HIV stick to their regimens and guiding newly diagnosed folks through treatment. Hursey’s advocacy shows how passionate he is about addressing health disparities, especially among Black people living with HIV. As a member of the Missouri HIV Justice Coalition, Hursey lobbies for changes to antiquated laws that criminalize people with HIV. Then, there’s his work for Black LGBTQ+ folks at the organization Blackout KC, and on a national level as a member of the CDC/ HRSA Advisory Committee on HIV and Viral Hepatitis, an ambassador for the Henry Kaiser Family Foundation’s AIDS campaign, a steering committee member for MPACT global action for gay men’s health and rights, a communications chair for U.S. People Living with HIV Caucus, and a founding member of the Black United Leadership Initiative, “which has educated and provided guidance to Black advocates fighting against HIV criminalization,” Hursey told the de Beaumont Foundation, which named him one of its “40 Under 40 in Public Health.” The key to tackling health disparities among Black people with HIV is educating those in charge — including medical industry executives and even prominent HIV advocates — about the realities of life for this marginalized group, he said. “We can’t end the HIV epidemic using tools that threaten the freedom of Black people,” Hursey tells Plus.— N B
GEORGE M. JOHNSON AUTHOR EXTRAORDINAIRE
THIS WRITER WAS PAINFULLY NAÏVE IN HIS YOUTH — NOW THEY WANT TO ENSURE THE NEXT GENERATION IS EDUCATED ABOUT SEX AND HIV.
IT DOESN’T TAKE long to recognize there’s something more to George M. Johnson than good looks and debonair grace. Their words are thoughtful and forcefully delivered, whether written or spoken, and they don’t shy away from “all of the very heavy subjects that oftentimes people say kids are too young to understand.” This urgency to tackle serious topics is evident in their recent book All Boys Aren’t Blue, which is as much a memoir as it is a primer for other queer Black youth. Johnson’s personal accomplishments, understanding of complex issues confronting society, and literary body of work are even more impressive considering their relative youth (Johnson turned 25 on Halloween). This activist, author, and person living with HIV is driven to share their insight and story so they can inspire others and fight a system that marginalizes those it fears and does not understand. Johnson last year told Out (a sister publication to Plus) they see HIV as not just a gay issue but also one rooted in the struggle for social justice. This observation seems all the more prescient today considering the global COVID-19 pandemic and Black Lives Matter protests against ingrained inequality and police violence. When Johnson spoke of Black people not just dying at the hands of police but also suffering disproportionately higher HIV infection rates, they might as well have been writing the script for 2020. It’s this forward-thinking approach to confronting injustice and helping others that led them to write All Boys Aren’t Blue. The memoir covers Johnson’s life from their early days growing up in New Jersey and into their college years. They speak frankly about their lack of sexual experience and knowledge, and how this double-edged sword can place other closeted queer youth in danger much like they were. All Boys Aren’t Blue was largely written for young adults at this same intersection of Blackness and queerness, Johnson says, specifically those lacking the tools and resources to safely navigate through adolescence and into adulthood. HIV will always loom large for Johnson, but they hope their message and efforts can help other queer Black youth overcome a society that often seems designed to ensure failure. Their goal is to help these marginalized youth see there is a way out and around the harsh inequities of life. “November 19 will mark 10 years of being HIV-positive,” Johnson tells Plus. “I’ve gone from playing out my own mortality to planning the next 50 years of my life. As long as I have a voice, I will use it to share my story, help others on their journey, and adamantly fight to end the epidemic.”— D P H IVPLUS MAG .CO M
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KEVIN DEESE FIGHTING THE INDEFENSIBLE AN OUTSTANDING STUDENT AT THE NAVAL ACADEMY, HE WAS DISCHARGED FOR BEING HIVPOSITIVE. K E V I N D E E S E ’ S D R E A M of becoming
As a student at the U.S. Naval Academy Deese received excellent performance reviews. In 2014 he applied for the Navy’s selective nuclear submarine program, plus an optional dive program. A required medical screening revealed he was HIV-positive. He was told he could not be commissioned as an officer because of it. Despite a physician pronouncing him fit for duty, he was discharged in 2017. “The truth is that the government has no compelling or public-serving reason to bar my military service or that of anyone else living with HIV,” Deece says. “But it takes people like my co-plaintiff...saying, ‘This is not right,’ to make change.” “There is a significant racial equity dimension to this issue,” Deese adds. “Given the way that HIV impacts people of color.... I am proud to be able to bring a face to this issue, but I also am conscious that my white face does not tell the whole story.” Despite the “ugliness” he has faced, Deese says, “You will be surprised at how many people will be in your corner,” when fighting injustice. —T R U DY R I N G COU RTESY L AM B DA LEGAL
a Nav y of ficer was deferred by discrimination, but he hasn’t given it up. “The Naval Academy teaches a commitment to naval service, a mission that I took to heart,” Deese says. “The denial of my service seems so arbitrary and out of step with the reality of living with HIV.” Deese joined a member of the Air Force to sue the Department of Defense for discrimination. The federal lawsuit, in which they’re represented by Lambda Legal, the Modern Military Association of America, and private attorneys, seeks their reinstatement as well as a declaration that their constitutional rights were violated. In September, Judge Richard D. Bennett of the U.S. District Court in Maryland denied the Trump administration’s request to dismiss their suit, so Deese will get his day in court.
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SIAN GREEN THE LIGHT OF LOUISIANA THIS BIG EASY MOM IS WORKING FOR ALL WOMEN WITH HIV.
SIAN GREEN OF New Orleans is an intelligent, hardworking single mom of two children — whom she loves “unconditionally.” She is also a woman living with HIV. “Becoming an HIV/AIDS activist was not second nature, nor was finding my purpose in life,” Green wrote on the Well Project’s A Girl Like Me blog. “While sitting down with my case manager, having a discussion about my life, which was very therapeutic, it dawned on me!” “My darkest trials,” she adds, “including self-esteem, domestic violence, homelessness, depression, anxiety, being a single parent, betrayal, and being HIV-positive always brought doubtful questions of: ‘When would it end? Where is the light? Why me? What have I done?’ My trials were my testimony! A testimony that hundreds to millions can hear and feel empowered. For those who are HIV positive and carry other burdens to know you are not alone.”
Green funneled her struggles into advocacy, finding fulfillment with her work at the Southern AIDS Coalition, the Institute of Women and Ethnic Studies, Louisiana AIDS Advoc a c y Net work , P o s i t i v e Wo m e n ’s Network, and Crescent Care. The Centers for Disease Control and Prevention honored Green’s contributions to the fight against HIV in Louisiana — which has one of the highest rates of diagnoses in the nation — by making her an ambassador to its Act Against AIDS Campaign. Of her many endeavors, Green is especially proud of her work with A Girl Like Me, which empowers and inspires women living with HIV. “This program speaks volumes to all women who are living with HIV,” Green says. “This program is not just a blog that we can submit to relieve the burdens we have encountered in this journey, but it is a support group…. We have a voice. We will not stop fighting!” — D G
CONNIE SHEARER VOICE FOR THE UNHEARD
THE LAS VEGAS RESIDENT AIMS TO ASSURE THAT WOMEN AND GENDER-NONCONFORMING PEOPLE AREN’T LEFT OUT OF THE CONVERSATION.
COU RTESY CON NIE SH E ARER;G REEN
C O N N I E S H E A R E R I S a voice for women and gender-nonconforming
people living with or at risk for HIV. When Shearer, who is nonbinary, was diagnosed in 1996, every group they found was run by and for men, with a focus on gay men (those most affected by the epidemic). “I will continue to say the same thing today that I said in 1996,” Shearer says now. “If you are not working to reach all people who are at risk of HIV, then you’re really only working to keep up with HIV and not end HIV. … We can’t end HIV if women are still diagnosing positive for HIV and also getting an AIDS diagnosis because our doctor either never thought to offer [testing] to us or did what my doctor tried to do and shame me for asking.” Women and nonbinary people “are still being left out of the conversation, out of spaces at decision-making tables, and out of clinical trials,” Shearer says. As co-chair of the Nevada HIV Modernization Coalition, they recently wrote to Gov. Steve Sisolak requesting the appointment of women and gender-nonconforming people living with HIV to the Task Force on HIV Exposure Modernization. “I was forced to do that because they formed and met for six weeks without appointing any woman or GNC people living with HIV,” Shearer says. “I keep using the word ‘forced,’ because I do not want to be ‘that person.’ I don’t like being loud; I wish that I could be Mx. Happy and just smile, but I can’t.” Shearer will not be silenced. Their activities include public speaking, volunteering six hours a day on a crisis hotline (three hours before work, three hours after), and writing. “I began writing in 2010 because I suffered carbon monoxide poisoning and was tethered to an oxygen machine and unable to do much of anything,” Shearer recalls. “What I could do is write, so I began a blog to talk about living with HIV and am still using my voice.” Shearer also writes for the Well Project and the Positive Women’s Network. Shearer lives with their daughter, daughter-in-law, and grandson, and decompresses with music and sound therapy. To other potential HIV activists, Shearer says, “Only become an advocate if you are serious about helping people.” And to anyone facing the day-to-day challenges of living with HIV, they advise, “Take your meds, eat fruit and candy every day on top of your coffee, and dance, even if you don’t have any rhythm, dance every chance you get.”—T R H IVPLUS MAG .CO M
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WELLNESS
BY
L CC M RY GA
AI N
D FEIDN O TMOTIVAT HAS A PYO O
WNG
EL I
HO FE
NSPIRA R I ACT ON YOUR EMTI O UIVE IMP T
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Here are some examples of inspiration: an account of someone who has overcome a challenge against what seemed like impossible odds. Music that makes you want to leap out of your chair and sing. Words from a leader or role model that cause you to look at life in a different way. An athlete who breaks a record. A scientist who has pushed the limits of what was considered possible. And here’s how being inspired can benefit you: Inspiration can lead to action. You may feel inspired to be more, to do more, to have an impact on the world around you, starting with your own corner of the world. Inspiration can lead to a sense of greater meaning. Inspiration is a moment when you feel like
SILVER WORKS/PE XELS
“I FEEL INSPIRED!” When was the last time you could say that? Given what’s going on in the world, no judgment if it has been a while. Your first response to my question might range from “often” to “Are you kidding?” When you’re living with the ups and downs of life as we know it, “inspired” may feel like a word that belongs in someone else’s vocabulary. And if you’re a little more aware of your HIV-positive status during this global pandemic, you might be feeling like you have even more reasons to ask what there is to be inspired about. But before you decide that inspiration is for anybody but you, let’s take a look at the definition of the word. Dictionary.com defines inspire as “to fill with an animating, quickening, or exalting influence.” And, in turn, an inspiration is “a thing or a person that inspires.” My personal definition of to inspire is to give someone a push forward in a positive direction. I try to do that with my clients, my friends, and myself. Inspiration is whatever gives you that push. Inspiration is accompanied by positive emotions, including happy or excited on one hand or calm and confident on the other. N OVEM B ER / D EC EM B ER 2020
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wellness
you are at one with the world, that you’re in sync with the ebb and flow of humanity. Inspiration can lead to acceptance. Inspiration is one of the moments when you nod your head and say to yourself, “Yup, that’s another reason why, even on a tough day, I know life is good.” Being inspired might just be about helping you to be OK with life as it is, even during a global pandemic, and committed to living your life to the absolute fullest. Just think about what living with inspiration can mean for living with HIV. So how do you get your hands around inspiration and bring more of it into your life? Is it something you can add to your to-do list with a deadline attached? And if not, will inspiration be one of those nice-to-haves that you think about during the time it takes to read this article and then assume is probably out of reach? Inspiration is within reach. In fact, chances are you’re already inspired. You just haven’t been taking the time to think about what inspires you. Here are some ideas for identifying your own inspiration along with bringing more of it into your life: Get quiet. Find some time to be alone on a regular basis, away from the noise and the demands and the distractions. Sit with yourself. Allow your mind to wander. Let your emotions come and go. Think about what it means for you to be inspired, and what has inspired you in the past. Get reacquainted with yourself.
MA XIMILIAN IMAG ING
Crank up the sound. Music can be inspiring. It speaks to a part of your brain that is beyond words and logic. Music can help you to connect with positive images and emotions that you’ve been pushing aside to focus on the day-today stuff of life. Put on some of your favorite tunes and see where it takes you. Go into nature. Spending some time in nature is one of the old standbys for getting inspired. Take a walk in a park or a drive through the country. All nature requires is that you watch and enjoy. There’s nothing to do. Relax! Push yourself out of your familiar zone. How about trying something new? A new hobby. Switching your morning routine around. Challenging yourself to be even
more excellent at something you are already pretty good at. It’s not so much what you choose as it is the act of choosing. Positive action inspires more positive action! Read/watch. Check out an inspiring book, like self-help or a novel with a spiritual theme. An inspirational movie. Tool around on the web and check out inspirational websites. You might even find an app on your smartphone that inspires you to look at life in a different way. Find a role model. Make a list of the people who have inspired you in some way. People you know personally or have read about or watched in the media. People who are living their life in a way that inspires you to do more in your own life. If possible, get together and talk with someone who inspires you and see what you can learn. Or read or watch a biography of someone inspiring. There’s probably a seed of wisdom, or a few seeds, that you can apply to your own life. Clean your house. Get rid of the clutter in your house and in your mind. The stuff that you have accumulated over the years that no longer serves a purpose can go. Create space for new ways of thinking and feeling. Be an inspiration! Share your story with someone else who could use some cheering up. You might be surprised at how your own experiences with overcoming life’s challenges and staying positive might be just what someone else needs to hear. Think of it this way: It might take someone else to help you identify the ways in which you are already living an inspired life. And if that happens, do more of whatever it is you’re doing. Don’t work too hard. Getting inspired isn’t a chore that you add to the list and then beat yourself up trying to accomplish. This is one of those times to take your eye off the ball. Spend time with yourself. Spend time doing things that open you up to new ways of thinking and living. This is a journey. An inspired one. Open up! Your heart and your mind. Be kind to yourself. Be kind to others. Let the inspiration find its way to you. How about this for inspiration: Embrace your life. Make the most of each day. And give yourself a push to take the best possible care of yourself!
Mental health editor GARY MCCLAIN, PH.D. is a therapist, patient advocate, and author in New York City who specializes in working with individuals diagnosed with chronic and catastrophic medical conditions. (JustGotDiagnosed.com) H IVPLUS MAG .CO M
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EVERYONE WITH HIV NEEDS TO KNOW ABOUT PRIOR AUTHORIZATION
THE PRACTICE COMPLICATES GETTING MEDS DURING A TIME WHEN IT’S ALREADY DIFFICULT. BY JEANNIE WRAIGHT
WITH DISTURBANCES TO everyday life now commonplace amid the COVID-19 pandemic, people with serious or chronic health conditions such as HIV should be on the lookout for potential problem areas in their health care. One longstanding health insurance procedure in particular, prior authorization, may prove more problematic than usual. Many drugs for conditions related to HIV utilize prior authorization. These include some antiretrovirals and diabetes medications, Mytesi for HIV-related diarrhea, all pulmonary hypertension medications, many cardiovascular drugs, triglyceridelowering agents, most anti-fungals, Epoetin/Procrit for anemia, and Ensure and oxandrolone for cachexia. Prior authorization is a process used by Medicaid and most private insurance companies as a safety and cost management measure. In essence, before a pharmacist can fill certain medications, they must contact the insurance provider, which reviews the request and most often requires clinical information from the physician before the pharmacist can fill the prescription. 46
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Prior authorization can be required for any drug but most often is utilized for costly medications, specialty drugs, or drugs not on the “preferred drug list.” This despite the main rationale used by insurance companies for the use of prior authorization — to ensure a system of checks and balances in safely prescribing medications. In other words, prior authorization is less about safety and more about an insurance company making sure a doctor isn’t prescribing a medication that could be switched out with a cheaper alternative or a drug on the “preferred list.” “The challenge health plans and PBMs (pharmacy benefit managers) face is how much to add to a physician’s practice,” says Brian Solow, MD, chief medical officer at OptumRX, a pharmacy care service company and an affiliate of UnitedHealthcare Insurance Company. “There is a need to ensure safety and optimal therapy, but it’s also important not to overburden practices or limit access to medications.” He adds, “Still, we have a responsibility to ensure the most effective use of medicines.” However, many of the HI V-related medications currently requiring prior authorization are not new or unproven drugs. They are medications with a great deal of data that are commonly used, thus eliminating the benefit of prior authorization, and leaving only the pitfalls. Prior authorization is known to be a tedious and time-consuming process that can result in delayed dispensation of medications, which can leave a person without a desperatelyneeded prescription for up to a week as the process between the doctor/medical staff, pharmacist, and insurance company plays out. One independent study of prior authorization concluded “…case studies of states’ prior authorization programs have observed that these programs can lead to bureaucratic and communication problems among enrollees, providers, and pharmaceutical benefit management firms under contract to the state, which in turn can lead to delays and other problems with prescription drug access.” The COVID-19 pandemic opens up entirely new problems in relation to therapies that require prior authorization. State governments are experiencing extreme loss of revenue due to the pandemic and extended stay-athome orders. With millions of Americans now unemployed, more people are applying for Medicaid, unemployment, and public assistance, placing an unprecedented burden on state governments. Additional costs including testing, contact tracing, and the care of patients are intensifying this burden. Particularly with Medicaid, costly medications requiring prior authorization may be one cost saving casualty with decisions of patient care
not being made on a doctor’s judgment but on a temporary economic need. The cost of prior authorization itself, which requires additional staff to manage, is an unnecessary burden on the Medicaid and health care systems. Many physicians consider prior authorization an impediment to caring for patients and an attack on their autonomy and medical training. According to Matthew Mintz, MD, FACP, an internist in Bethesda, Md., “Prescriptions are expensive and prior authorizations are an easy way for insurance companies to save money. The process is made, in my opinion, purposefully burdensome so that the physician or patient will simply give up and use a cheaper alternative.” The prior authorization process under normal circumstances is time-consuming and problematic to providers and an annoyance and potential danger to patients. Patients often end up with delayed prescriptions and the responsibility for tracking down where the break in the chain of doctor’s office to pharmacy to insurance company/HMO/Medicaid occurred, often resulting in no prescription days after it’s due. However, under current conditions during the COVID-19 pandemic, the antiquated practice is an even more serious barrier which could prove extremely damaging to people living with HIV and other medicationcontrolled conditions. Accessing primary care physicians to submit the needed documentation for prior authorization may prove more difficult than usual. Many infectious disease doctors, including HIV specialists, are now providing care in hospitals to COVID-19 patients. Others with small practices had temporarily closed their doors under stay at home orders, limiting visits and office hours. As a second wave is predicted, these closures may become common throughout the coming years. Others have downsized office staff, including those responsible for answering phones and facilitating prior authorization requests. The process of prior authorization under current conditions could lead to a greater number of people experiencing disruptions in receiving essential medications and an increase in hospitalizations. The decision for appropriate medical treatment should be left to doctors, not nonmedically-trained insurance workers, particularly at a time when such interruptions in treatment can prove more devastating than usual. The leadership of the COVID-19 task force, many who have worked in the HIV field for decades, continue to talk about AIDS in a past tense. However, for those struggling in an unprecedented new pandemic environment, the issues of prior authorization are very much a contemporary concern.
Contributor JEANNIE WRAIGHT is a health writer. (@JeaWra)
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LET’S WRITE ABOUT SEX
ALEX CHEVES GAINED A FOLLOWING AUTHORING CANDID ARTICLES ABOUT SEX AND HIV IN NATIONAL MAGAZINES AND HIS BLOG, LOVE, BEASTLY. NOW SIGNED TO A BOOK DEAL, THE GAY JOURNALIST TELLS US WHAT IT’S LIKE TO SHARE YOUR INNERMOST FEARS AND FETISHES WITH THE WORLD. WHEN I ORIGINALLY pitched the book, I pitched it as a love letter to my parents, in a way. Sort of inviting them into a discussion of my sex life. Just because my relationship with them so starkly changed in more recent years, in a way I’ve had to really reexamine. I’m 50 percent of the way through and I guess I may be getting a little bit of cold feet on that idea of involving my parents so much in it. But at its simplest, the book is an invitation into what I consider a sex-positive culture. 48
I want to be explicit: I’m not teaching about sex. [With] so much of my writing, I take the role of teacher and I can’t really do that in a book. I’m not a licensed sex educator. I probably will be at some point, but this is not a sex ed book. It’s personal essays on how I arrived at my sexuality and how it manifests now. There are moments I’ve gotten shy. It’s one thing to write an article about fisting on the internet and to explain it, because there’s a level of distance when you’re teaching
about sex that isn’t present when you’re writing about your own sex. The points that make me the most afraid to talk about, like my more extreme kinks like fisting or substance abuse and gay men, I have a really hard time talking about. I’m having to present things I know my parents don’t know about and I’m really shy about, which is really surprising to me. My parents generally don’t read my work. After I wrote an article for The Advocate (a sister publication of Plus) called “Why I Didn’t Come Out as Poz on World AIDS Day,” that was when they decided to start reading. That was a big discussion. That’s how I came out as HIV-positive everywhere and that way of coming out, in hindsight, was a little cruel just because they were having to field questions from relatives at the same time they were learning this information themselves. They later sat on it and we discussed it. It was actually a really beautiful conversation — without necessarily saying sorry, they acknowledged they had created conditions where I couldn’t tell them my HIV status. I found out from my sister that was when they decided to stop reading my writing, but they do know what I write about. They know I mostly write about sex. So since they know I have a book deal they safely assume it’s going to be about sex which means they’re probably not going to read it. But I hope they do. I freak out about everything I do. But writing is cathartic when I do it. There’s a moment when you’re writing something, especially if it’s personal, you reach a sort of cadence where you know it’s good. Like, I know this is the right way to say it. I almost hold my breath and get a little dizzy and have to remind myself to breathe. I’ve been having a lot of those moments lately. I’m happy with what I’m writing; I just know when it comes time for the book to go out it’ll be a big deal, personally. Cheves’s currently untitled book will be released in 2021 by Unbound Edition Press.
JON DE AN
by a l e x c h e v e s a s to l d to n e a l b r ov e r m a n
b a c k ta l k
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Since 1998, the Matthew Shepard Foundation has worked tirelessly to ERASE HATE from every corner of America. We strive to replace the seeds of hate with those of compassion and acceptance, through our unique array of programs.
Erasing Hate since 1998
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SUPPORT the Matthew Shepard Foundation VISIT MatthewShepard.org
TEXT TO GIVE Text MATTHEW to 844-333-5897
10/14/20 10:10 AM
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
GILEAD and the GILEAD Logo are trademarks of Gilead Sciences, Inc. All other marks are the property of their respective owners. © 2020 Gilead Sciences, Inc. All rights reserved. UNBC7269 08/20
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