A SMART+STRONG PUBLICATION MARCH 2021 POZ.COM $3.99
H E A L T H ,
L I F E
&
Positively Elite Advocating for an HIV cure
Loreen Willenberg
H I V
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.
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.
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.
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
PZA_523985_523986.indd 1
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 SHINING, 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
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D’EVA LIVING WITH HIV SINCE 2009 REAL BIKTARVY PATIENT
KEEP SHINING.
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 D’Eva’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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CONTENTS
EXCLUSIVELY ON
Without taking HIV meds, Loreen Willenberg is able to control the virus.
POZ.COM #ADVOCACY
MAKE A DIFFERENCE Fighting against HIV/ AIDS has always been a struggle. Much work remains to end the epidemic. POZ encourages you to get involved in advocacy. Go to poz.com/ advocacy to find the latest news and learn how you can make a difference in the fight.
D
#CRIMINALIZATION FIGHT HIV STIGMA
D
#UNDETECTABLE
SCIENCE, NOT STIGMA
The science is clear: People who have an undetectable viral load can’t transmit HIV sexually. In addition to keeping people healthy, effective HIV treatment also means HIV prevention. Go to poz.com/undetectable for more.
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POZ DIGITAL
READ THE PRINT MAGAZINE ON YOUR COMPUTER OR TABLET
22 AN EXCEPTION TO THE RULE Loreen Willenberg may be the first woman cured of HIV without having a bone marrow transplant, but there’s more to this elite controller. BY KATE FERGUSON
28 SELF-CARE People living with chronic illnesses are coming up with ingenious coping mechanisms in the face of COVID-19. BY CAROLINE TIEN 3 FROM THE EDITOR Higher Ground
4 POZ Q+A Toni-Michelle Williams, executive director of the Solutions Not Punishment Collaborative, discusses restorative justice and HIV.
6 POZ PLANET Superheroes fighting for your right…to donate blood • efforts to get PrEP power to the people • Everyday • meet the nation’s new health leaders
Go to poz.com/digital to view the current issue and the entire Smart + Strong digital library.
16 RESEARCH NOTES
Injectable PrEP for women • good and bad fat • CRISPR snips out HIV • more about COVID-19 and HIV
18 CARE AND TREATMENT
U.S. HIV death rate drops • antiretrovirals don’t stop cell aging • new tenofovir tied to weight gain • HIV treatment lowers early Alzheimer’s risk
20 BASICS Eating for Your Health
12 VOICES
21 ASK POZ
Winners of the Fifth Annual POZ Awards, as voted on by our readers; researchers from the Global HIV Pain Task Force seek community input about chronic pain
Who can safely get COVID-19 vaccines?
14 SPOTLIGHT Hope for 2021
32 HEROES In 2013, Shirlene Cooper created the Women’s Empowerment Art Therapy Workshops at Visual AIDS. Now she leads the group virtually on Zoom.
POZ (ISSN 1075-5705) is published monthly except for the January/February, April/May, July/August and October/November issues ($19.97 for an 8-issue subscription) by Smart + Strong, 1001 Sixth Avenue, 12th Floor, New York, NY 10018. Periodicals postage paid at New York, NY, and additional mailing offices. Issue No. 250. POSTMASTER: Send address changes to POZ/Smart + Strong, 1001 Sixth Avenue, 12th Floor, New York, NY 10018. Copyright © 2021 CDM Publishing, LLC. All rights reserved. No part of this publication may be reproduced, stored in any retrieval system or transmitted, in any form by any means, electronic, mechanical, photocopying, recording or otherwise without the written permission of the publisher. Smart + Strong® and POZ® are registered trademarks of CDM Publishing, LLC.
COVER AND THIS PAGE: (WILLENBERG) ARI MICHELSON; (GAVEL/BOOKS, BARBED WIRE AND MAGNIFYING GLASS) ISTOCK
Opinions still vary on whether criminal law should apply to HIV disclosure, exposure and transmission. However, there is a growing consensus to make laws reflect current science. Go to poz.com/ criminalization for more on how you can get involved in reform efforts.
FROM THE EDITOR
Higher Ground
EDITOR-IN-CHIEF
ORIOL R. GUTIERREZ JR. MANAGING EDITOR
JENNIFER MORTON DEPUTY EDITOR
TRENT STRAUBE SENIOR EDITOR
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I
TESTED HIV POSITIVE IN 1992 at age 22. That was four years before effective treatment. Living in New York City, I saw the epidemic up close, so I expected to be dead before I was 30. Then a funny thing happened on the way to the graveyard—I kept on living. Not only was I very much alive, I was in excellent health, apart from living with HIV. So much so that I decided to stop taking AZT six months after I had started. I didn’t take HIV medication again for more than a decade. I went to the doctor regularly, and my blood work was always fine, until it wasn’t. And that’s when I finally gave in. I’ve been undetectable ever since. For more than a decade, I believed that perhaps I was one of the lucky ones—a long-term nonprogressor. Based on my labs, who could blame me? Even my doctors had cautious hope. I held that belief so closely that it took me well over a year to accept that I wasn’t. The mind is tricky that way. So I can relate a bit to the journey that Loreen Willenberg has traveled. Fortunately for our cover subject—and indeed for all of us—she is the real deal. She has gone from long-term nonprogressor to elite controller and is now possibly the first person to be cured of HIV without a bone marrow transplant. That’s quite a wild ride for anyone. Apart from sharing good health, Loreen and I have another thing in common: POZ. When the magazine launched in 1994, I was still an HIV newbie. I needed guidance, and POZ was there for me. Loreen credits POZ with being there for her too. Go to page 22 to read about her advocacy for an HIV cure. Not only is Loreen the first person who may be cured of HIV without a bone marrow transplant, she is also the first woman. In this special issue focused on women, we spotlight the stories of other fierce women. Toni-Michelle Williams is one of them. She is the executive director of the Solutions Not Punishment Collaborative, a Black trans- and queer-led organization working
to build safety, leadership and political power. The organization has built leadership programs for Black trans and queer participants who have experienced violence, been incarcerated or engaged in sex work. Many of them are living with HIV. Go to page 4 to read about the group’s efforts for restorative justice. Another wonderful example is Shirlene Cooper. When she was diagnosed with AIDS in 1996, Shirlene was also told she had tuberculosis, syphilis and cervical cancer. She spent two years paralyzed from the neck down. She started walking again, however, and hasn’t looked back. Go to page 32 to read about the many HIV groups she has helped ever since. Getting through the coronavirus pandemic has turned into a marathon. Everyone has been affected, but perhaps no population has been hit as hard as people living with chronic illnesses, including HIV. Go to page 28 to read about self-care in the COVID-19 era. This issue of POZ is our 250th print edition. To mark the occasion, we created a commemorative poster for you to enjoy. Thanks again to all of our loyal readers!
ORIOL R. GUTIERREZ JR. EDITOR-IN-CHIEF editor-in-chief@poz.com
Want to read more from Oriol? Follow him on Twitter @oriolgutierrez and check out blogs.poz.com/oriol.
poz.com MARCH 2021 POZ 3
POZ Q+A
BY OLIVIA G. FORD
Toni-Michelle Williams is the executive director of the Solutions Not Punishment Collaborative.
Restorative justice can uplift Black transgender and queer people and people living with HIV.
T
ONI-MICHELLE WILLIAMS IS THE EXECUTIVE DIRECTOR OF the Solutions Not Punishment Collaborative (SNaP Co.), a Black transand queer-led organization working to build safety, leadership and political power. She is an auto-theorist, somatic practitioner, healer and performance artist from Atlanta. SNaP Co. is grounded in an abolitionist approach, which in this context means divesting from law enforcement and investing in the wellness and restoration of communities. Since she arrived at SNaP Co. in 2015, Williams has built two leadership development programs for Black trans and queer participants who have experienced violence, been incarcerated and/or engaged in sex work. Many of them are living with HIV. Williams has advocated to transform the criminal legal system in Atlanta. As the conversation around alternatives to the historically violent and biased U.S. policing system—including restorative and transformative justice models—has gained national attention, so, too, has Williams increasingly been recognized.
What are your “one-liner” definitions of restorative and transformative justice?
Restorative justice is a process of repairing harm and restoring trust and faith with individuals who have participated in and have been impacted by that harm. Transformative justice, for me, is what comes after the repair and the restoration. It is the possibility and the actions of change—what has transformed since things were restored and repaired. It’s steeped in faith and being comfortable with what is possible. How do these practices come up in your everyday work?
SNaP Co. believes Black trans people are the experts in our own lives. We are a vast
4 POZ MARCH 2021 poz.com
community that has many types of experiences—particularly with substance use. We practice restorative justice a lot within SNaP Co. by the ways we hold space for our employees and members around their ability to show up for the work while also holding their transitions, their substance use or abuse, their dysphoria, the impacts of their medications. An example of the process: We once had a staff member who was a drug user, and it was my responsibility as a director to practice harm reduction. What that meant was being clear and frank about what my expectations were and also giving them space to meet those expectations or not. There were lots of breakdowns that happened because of their substance use. The repair began when I had to break the relationship. It’s been a few years. I shared with them what I needed for our relationship to be restored. They were not able to meet that until recently. They emailed me about how they were in deep reflection about their behavior over the past year. The harm was caused—their behavior
BOTH IMAGES: COURTESY OF TONI-MICHELLE WILLIAMS/VANESSA HAMB
POSITIVE TRANSFORMATION
was out of line. The restoration is happening now with how we are able to be in conversation about it. The transformation will happen when we are able to make new commitments to each other. I needed to break the relationship in order to see what could even be repaired. I think that we oftentimes don’t do that. We fear isolation, rejection, being alone, and so we don’t break relationships with people, institutions or entities that cause us harm. It’s hard for us to imagine new ways to be—without our partners or lovers, or police, or our family members. Part of restorative justice is being OK with and being able to sit with what breaks—and not being so quick to fix but being able to trust the process. Restorative justice has a lot to do with our embodiment of grace. I don’t think we have that embodiment, and we look to criminal injustice to solve our issues.
body for you not to share that with me?” That kind of conversation takes skill. Everybody can’t be in that kind of conversation, which is why the system has more power and authority, because what is in place of that is handcuffs and cages. You don’t even have to have the conversation. “You feel that you were exposed to HIV? We also think that it’s a nasty thing, so let’s throw them behind bars!” But what if Black people had the capacity to hold those types of conversations? To confront that type of shame and stigma within themselves? And when I say “confront,” it’s not just to call out but to also be in the deep waters—no matter how long it takes to have a resolution and to have understanding around the whys and where people are coming from, so that we can have true satisfaction.
How do restorative and transformative justice relate to HIV criminalization and advocacy—and even HIV prevention?
The power of restorative justice is where it relates to debunking and eradicating stigma around our lives, bodies and decisions. If we are able to honor the process of restoration, number one is inclusion: All those parties who have participated in and been impacted by the harm are invited to participate, and folks are open enough to accept new approaches that are relevant to the situation. Stigma and shame work hand in hand. Those are often the two things that fuck up everything—our relationships and our ability and capacity to show up and be present in any situation. Debunking stigma and confronting shame allow us to be present with each other and ourselves in a different way that the system, mass incarceration, does not allow. When we talk about decriminalizing HIV, we’re not just talking about lawmakers. Yes, elected officials, these white people and rich people in power, have to change the laws in order for X, Y and Z to happen. But then what happens with X, Y and Z? X and Y still have to have a conversation and say, “I am terrified that I may have been exposed to HIV. Why didn’t you tell me? What was going on inside your mind and your
Toni-Michelle Williams
doms” so that you don’t catch HIV. All those stigmatizing approaches don’t support the possibility of being well on the other side of it. It keeps you in fear, and so you will treat other people as such. There is something about the power of being able to witness behavior changing or transformation happening. If I have seen you do some new things, I can develop new expectations. But if I can’t see you, if you are in a cage, how do we evaluate that? Who evaluates that—a parole officer, a probation officer or me as the person who has been harmed? That process and those conversations are important as we’re trying to figure out how to decriminalize HIV and identify alternatives to that type of punishment. It will behoove us, as an HIV community and as HIV advocates, to not
“Restorative justice has a lot to do with our embodiment of grace.”
Transformative and restorative justice are about how people are satisfied without throwing others in a cage or slapping on handcuffs. How can we all experience joy and satisfaction and still be free? When we involve police with HIV criminalization, we skip the opportunity to repair and restore. That places so much power in the hands of the person who holds the anger and also who holds the stigma—without being aware of the transformation that is possible. When people say, “Oh my God, you gave me HIV,” and they are so angry, if they were reminded that there are whole communities of people who are living and thriving in that experience, they would know that restoration is possible. We need to talk about prevention in ways other than “Just get tested” so you don’t have to be positive or “Use con-
just focus on the preventive measures we have via medications but interventions and alternatives we can create that honor how Black people, particularly Black people living with HIV, believe that restoration and transformation are possible. How do we get there as a community?
We get there by more people being able to sit with themselves, sit with their wrongs and all their rights; to be vulnerable enough to express that and feel safe inside of their vulnerability; and to trust that what they’re feeling is valid and that people are going to receive and listen and hear and be present and open. People don’t think that other people are open to change, so it stops all of us from changing. We say that a lot: “Can’t nobody change!” But people transform if they feel safe enough to do so. ■
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POZ PLANET BY TRENT STRAUBE
From left: a detail of Untitled; Untitled (HULK/AIDS); a detail of Will You Save Superman?; and Untitled (HEMOGOBLIN). The artworks incorporate original comics, used medical gloves and blood from undetectable HIV-positive donors and gay men on PrEP along with other materials.
FIGHTING FOR YOUR RIGHT… …TO DONATE BLOOD! He may be faster than a speeding bullet, but does Superman have the power to stop a discriminatory blood donation policy? Artist Jordan Eagles incorporates numerous images of the Man of Steel and other superheroes along with actual blood into the artworks on display in the solo exhibit Can You Save Superman? II, on view at the University of Alabama at Birmingham. The blood Eagles uses was donated by people with HIV and gay men on pre-exposure prophylaxis (PrEP). The artworks draw attention to a U.S. policy that requires gay and bisexual men, but not heterosexuals, to abstain from sex for three months before they can donate blood, regardless of their risk of having HIV or the fact that donated blood is screened for the virus. Until the COVID-19 pandemic heightened the need for blood donors, the policy required a year of celibacy.
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The Food and Drug Administration recently launched a study to explore further easing the rules. The United Kingdom enforces a similar three-month requirement, but beginning this summer, the country will allow gay and bisexual men to donate if they’ve been in a Jordan Eagles long-term monogin his studio amous relationship with American for at least three Carnage 6/14 months before the donation. “Discriminatory and unnecessary deferral periods prevent [gay and bisexual men] from helping to save
lives,” says New York City– based Eagles, who for over two decades has been creating works exploring the ethics of blood. The current exhibit includes a virtual gallery at CanYouSaveSuperman.com that features an essay by Andy Warhol scholar Eric Shiner. Eagles’s latest pieces build on comics with blood-donor themes, such as the 1971 Action Comics cover showing Superman on a gurney, infected with a “micro-murderer” virus and in need of blood transfusions from the countless people eagerly waiting in line to donate. In one version that’s included in the Alabama show, an enlarged image is splattered with the blood of a gay man on PrEP to illustrate that in 1971 a gay man could have helped save Superman—but not in 2021.
(UNTITLED AND WILL YOU SAVE SUPERMAN?) COURTESY OF UAB/KRIS GRAVES; ALL OTHERS COURTESY OF JORDAN EAGLES STUDIO
Jordan Eagles creates art with human blood and superheroes.
PrEP WORK An HIV prevention roundup When taken as pre-exposure prophylaxis (PrEP), daily Truvada or Descovy tablets are about 99% effective at preventing gay and bisexual men from contracting HIV—and likely greater than the current estimate of 88% to 90% effectiveness for heterosexual men and women. A growing body of global research shows that PrEP greatly reduces rates of new HIV cases not just among those taking the drugs but also among those not on it. Unfortunately, misleading ads for personal injury lawyers on social media continue to scare off readers by overstating the health risks of Truvada (which, like Descovy, consists of two meds). What’s more, many care providers still don’t understand—or prescribe—PrEP, and its uptake remains low among minority populations at higher risk for HIV. Luckily, the following changes might address these challenges. Insurance coverage: As of this year, health insurers are required by law to cover PrEP without charging deductibles and co-payments. That’s because the U.S. Preventive Services Task Force, an independent panel of health experts, gave PrEP an A grade, and the Affordable Care Act requires health plans to cover preventive services that receive an A or B grade. Easier access: A new law in Colorado allows pharmacists to prescribe PrEP and PEP (post-exposure prophylaxis). And in California, a virtual program at Stanford Children’s Hospital offers PrEP to adolescents and young adults via a cellphone
EVERYDAY March
These dates represent milestones in the HIV epidemic. Visit poz.com/aidsiseveryday to learn more about the history of HIV/AIDS. BY JENNIFER MORTON
8
EAGLE SCOUT HENRY NICOLS, age 17, goes public with his HIV status at a press conference in Cooperstown, New York, and becomes the first student to disclose his status. (1991) (VO AND HART-COOPER) FACEBOOK/STANFORD CHILDREN’S HEALTH; (LATIFAH) KATHY HUTCHINS/SHUTTERSTOCK; (STEWART) WIKIMEDIA
or computer. Clients receive at-home HIV Megen Vo, MD, and Geoff Harttests (it’s important to be HIV negative Cooper, MD, run a before starting PrEP), and they can fill virtual PrEP prescriptions at their local pharmacy. program. “The remote nature…is especially important during COVID-19,” says the program’s director Geoff Hart-Cooper, MD, who adds that the program “offers an added layer of confidentiality, without involving a parent or other guardian if that is the patient’s preference.” Generic PrEP: Teva Pharmaceuticals’ generic Truvada hit the U.S. market last fall. At $1,455 per month, it’s only a few hundred dollars cheaper than the brand name, but Teva, like Gilead Sciences, which makes Truvada and Descovy, does offer a co-pay card. The real savings arrive this spring, when other companies can begin producing generic versions, which are sold outside the United States for about $25 a month.
13
EIGHTY PEOPLE LIVING WITH HIV pose naked for the May cover of POZ, marking the 10th anniversary of the magazine’s publication. (2004)
10
NATIONAL WOMEN AND GIRLS HIV/ AIDS AWARENESS DAY
The film LIFE SUPPORT, SUPPORT which features Oscar-nominated actress and rapper Queen Latifah as an HIV-positive mother and peer counselor working at an AIDS organization in Brooklyn, premieres on HBO. (2007)
17
JERMAINE STEWART, an American R&B singer best known for his 1986 hit single “We Don’t Have to Take Our Clothes Off,” dies of AIDSrelated liver cancer. (1997)
20
NATIONAL NATIVE HIV/AIDS AWARENESS DAY
POZ PLANET BY TRENT STRAUBE
MEET THE NATION’S NEW HEALTH LEADERS A roll call from team Biden-Harris
XAVIER BECERRA
ANTHONY FAUCI, MD
MARCIA FUDGE
Secretary of the Department of Health and Human Services Serving as California’s attorney general when nominated, Becerra has “a long track record of fighting for the Affordable Care Act and for health equity,” notes AIDS United, “but some Senate Republicans are concerned [about his] lack of public health policy expertise.”
Director of the National Institute of Allergy and Infectious Diseases and Chief Medical Adviser on COVID-19 to the President This physician-scientist has led the NIAID and advised presidents since 1984, including during the early HIV epidemic, when he butted heads with AIDS activists before collaborating with them.
Secretary of the Department of Housing and Urban Development Why include Representative Fudge (D–Ohio) in this roundup? As HIV and homelessness advocacy group Housing Works is fond of claiming, “Housing is health care!” Plus, in her HUD role, she’ll oversee the Housing Opportunities for Persons With AIDS program.
VIVEK MURTHY, MD, MBA
MARCELLA NUNEZ-SMITH, MD, MHS
ROCHELLE WALENSKY, MD, MPH
COVID-19 Equity Task Force Chair An associate professor of medicine and epidemiology at the Yale School of Medicine, she’s a leading expert on inequities, discrimination and racial disparities in health care—as such, she’ll offer vital insight, because COVID-19, like HIV, disproportionately affects Black and brown communities.
Director of the Centers for Disease Control and Prevention An HIV doctor, infectious disease specialist and professor of medicine at Harvard, Walensky will head the nation’s public health institute. Renowned AIDS activist Gregg Gonsalves says she’s “the perfect person to lead us out of the darkness of this [COVID-19] pandemic.”
Surgeon General Murthy returns as “America’s Doctor,” a post he held from 2014 to 2017 under the Obama administration, when he helped the nation tackle the Ebola and Zika viruses and the opioid crisis. He also cofounded the global HIV education group VISIONS and was an attending physician at Brigham and Women’s Hospital at Harvard Medical School.
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(BIDEN AND HARRIS) VP BROTHERS/SHUTTERSTOCK; (BECERRA) COURTESY OF THE STATE OF CALIFORNIA DEPARTMENT OF JUSTICE; (FAUCI) COURTESY OF ANTHONY FAUCI, MD; (FUDGE) COURTESY OF THE U.S. HOUSE OF REPRESENTATIVES; (MURTHY) COURTESY OF HHS; (NUNEZ-SMITH) COURTESY OF YALE SCHOOL OF MEDICINE; (WALENSKY) COURTESY OF MASSACHUSETTS GENERAL HOSPITAL
After enduring nonstop efforts by Republican leaders to dismantle the Affordable Care Act, allow discrimination in health care and ignore basic science, many Americans— especially those living with chronic illnesses—are relieved to have a new Democratic administration at the helm. Here’s a look at key health officials working with President Joe Biden and Vice President Kamala Harris.
If you are living with HIV, ask yourself the following questions: Have I lost weight? Have I lost weight without trying? Does the change in my weight impact how I feel about myself or my health? Is my clothing looser than before because I have lost weight without trying? Have those I know mentioned that my appearance has changed?
Do I have less energy? Are any of my usual activities more difficult to perform? Am I exercising less than in the past? Do I need to take a break more often? Do I tire more easily after certain activities?
If you answered “yes” to any of these questions, take this questionnaire to your next appointment with your healthcare provider to start a conversation about HIV-associated wasting and to inquire about treatment. Together you can discuss next steps. To learn more about HIV-associated wasting, visit: AmIWasting.com
EMD Serono is a business of Merck KGaA, Darmstadt, Germany ©2020 EMD Serono, Inc. US-NONE-00026
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VOICES BLOGS AND OPINIONS FROM POZ.COM
POZ AWARDS 2020 In an article titled “POZ Awards 2020: Winners,” the POZ editors compiled the winners, as voted on by readers, of the Fifth Annual POZ Awards, which spotlighted HIV/AIDS in media and culture. Below is an edited excerpt. pandemic. The result was Still Beginning, a bold and creative collection of films about topics such as stigma, public sex, ongoing AIDS activism and intergenerational conversations. The seven works resulted in an hourlong program, which was screened on World AIDS Day/ A Day With(out) Art on December 1, 2019, in over 115 locations.
Best in Film or Television: My Friend, The Mayor: Small Town Politics in the Age of Trump We have to admit, we’re a bit partial to this ditty of a documentary. Available on Amazon Prime, it features HIV activist, author and POZ founder Sean Strub, self-proclaimed “leftie gay guy with AIDS,” as he runs for mayor of the conservative small town of Milford, Pennsylvania. Dutch journalist Max Westerman follows Strub, a Democrat, down country lanes as he campaigns against his Republican opponent, who is the hometown favorite son.
Best in Performing Arts: One in Two Taking inspiration from the 10th anniversary of his own HIV diagnosis, playwright Donja R. Love created a work that explores the experience of being queer and Black in modern society. One in Two was a show performed off-Broadway at the intimate Signature Center on Theatre Row on 42nd Street. The title refers to a 2016 statistic from the Centers for Disease Control and Prevention stating that one out of every two Black gay or bisexual men will be diagnosed with HIV in his lifetime. Using both humor and honesty, Love created a story that resonated with audiences.
Best in Visual Arts: Still Beginning: A Day With(out) Art To commemorate the 30th Day With(out) Art, Visual AIDS commissioned artists Shanti Avirgan, Nguyen Tan Hoang, Carl George, Viva Ruiz, Iman Shervington, Jack Waters/Victor F.M. Torres and Derrick Woods-Morrow to create a kaleidoscope of short videos in response to the ongoing HIV
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Best Virtual Fundraiser: AIDS Walk: Live at Home With so many events canceled because of COVID-19, it seemed likely that the iconic annual AIDS Walks in New York and San Francisco would be as well. But GMHC in New York and San Francisco’s PRC joined forces and, in partnership with iHeart Media, launched
the virtual extravaganza AIDS Walk: Live at Home, held July 19, 2020. The star-studded event benefited GMHC, PRC and more than 45 other agencies. Best in Literature: Lyrics of My Life: My Journey with Family, HIV, and Reality by Branden James James was a bundle of nerves when he took the stage for season 8 of the reality hit America’s Got Talent, but when he opened his mouth to sing the opera classic “Nessun Dorma” by Puccini, the audience rose to its feet, and the celebrity judges beamed. What they didn’t know—and what even his family didn’t know—was that James was living with HIV. In this frank autobiography, the handsome singer tells his life story. Best Reason to Keep Acting Up: Black Lives Matter The BLM movement has been active since it was formally founded in 2013 as an international antiracist protest and advocacy organization. In 2020, because of the protests surrounding the violent deaths of George Floyd, Breonna Taylor, Ahmaud Arbery and so many more, the Black Lives Matter movement gained more strength and support. HIV and COVID-19 diagnoses show up disproportionately in people of color, adding to the cases of police brutality. The time to stand up for Black lives is now. ■
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Best Celebrity Advocate: Karl Schmid Since coming out as a person living with HIV in 2018, the debonair Australianborn television host and correspondent has gone full force with his anti–HIV stigma message. Schmid has become the editorial director of +Life, a digital platform that inspires and uplifts people living with HIV and their supporters.
NO PAIN In an opinion piece titled “Developing Research Priorities for Chronic Pain in People Living With HIV,” researchers from the Global HIV Pain Task Force sought input from the HIV/AIDS community. Below is an edited excerpt.
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eople living with HIV experience chronic pain more commonly than others. Chronic pain is associated with reduced quality of life, poorer physical function, mental health problems, trouble working or staying in school and in some cases greater difficulty adhering to HIV treatment and keeping up with basic health. Leading doctors and researchers have increasingly recognized the importance of addressing chronic pain, including the Infectious Diseases Society of America, the HIV Medicine Association and the British HIV Association. World leaders have proposed a global focus on health-related quality of life for people with HIV. Building on the Joint United Nations Programme on HIV/ AIDS (UNAIDS) 90-90-90 campaign (90% of people with HIV diagnosed, 90% on treatment and 90% virologically suppressed), a “fourth 90” has been proposed to address factors that impact quality of life, such as pain. Despite the large need, it isn’t completely understood why chronic pain develops in people with HIV. Explanations follow the biopsychosocial model, which explains that the chronic pain experience is a combination of biological, psychological and social factors. Biologically, HIV can contribute to painful conditions like neuropathy or musculoskeletal pain. Proteins produced by the virus and the body’s
inflammatory response may cause the nervous system to become sensitized to pain. Psychological factors, including stress and coexisting mental health disorders, can also exacerbate pain, as can social issues, including isolation and lack of access to needed services. Evidence-based guidance for how to optimally manage pain in people with HIV is also limited. Most medications used to manage pain, including prescription opioids, antidepressants and anti-inflammatory drugs, have not been well studied in people with HIV, and some experts believe they have limited effectiveness. Psychological or physical therapy–based approaches have shown initial promise; however, the potential of these therapies remains uncertain. In the wake of COVID-19, it can be easy to forget that not too long ago, our focus was on another public health crisis: the entwined epidemics of opioid use disorder and chronic pain. The death toll due to opioid overdoses spurred major government action. In 2018, the National Institute of Health’s Helping to End Addiction Long-term (HEAL) Initiative devoted substantial resources to developing sciencebased solutions to the opioid crisis, including better treatments for opioid use disorder and effective, nonaddictive pain therapies. It is crucial that the needs and perspectives of people living with HIV and
chronic pain are given the attention they deserve as this research advances. To achieve this, we formed the Global HIV Pain Task Force in 2019. We are a group of researchers and people with lived experience from the United States, United Kingdom, Canada and South Africa. We study, treat and live with chronic pain and HIV and are passionately committed to finding the safe and effective treatments we need. In the summer of 2019, we came together to strategize, focusing on establishing research priorities in this area. We came up with many ideas and developed a list of the research goals we thought were most important. But it’s not really about what we think. We need the input of a diverse group of individuals with lived experience of HIV and chronic pain to tell us what’s important to them. Are the research goals we established good ones? Are there other areas that we missed? We also want to know about you. There is surprisingly little information out there about what it’s like to live with HIV and chronic pain. How are you managing? What helps and what doesn’t? If we don’t know the answers to these basic questions, how do we even get started? We request that you help by going to painregistry.online/research and completing our survey. Your answers matter, and your unique voice is crucial. ■
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SPOTLIGHT BY JOE MEJĂ?A
Hope for 2021 COVID-19 emerged amid extreme political division, civil unrest, natural disasters and the ongoing HIV epidemic, exposing just how unprepared the United States was for such a public health crisis and making the year 2020 one for the history books. Initially, misinformation and hopelessness spread as quickly as COVID-19 took the lives of the most vulnerable among us, including many people with HIV. But despite an inadequate federal response, hope arose in the form of scientists such as Anthony Fauci, MD, a veteran of the battle against HIV, who reassured us with fact-based guidance on how to protect ourselves through simple changes in behavior. Hope also came via the AIDS organizations that adapted to offer COVID-19 education, distribute masks and hand sanitizer and coordinate food pickup or delivery services while continuing to provide HIV counseling, testing and treatment. And finally, hope arrived by way of the two vaccines now available in the United States that protect against the coronavirus. In other words, hope has enabled us to imagine an end to COVID-19. Before COVID-19, HIV was arguably one of the worst public health threats in the United States. It is a testament to the resilience of the HIV community that despite the novel coronavirus, efforts to end HIV continue. For example, scientists are developing new prevention methods, such as microbicidal vaginal rings and long-acting injectables, while advocates work to promote testing and increase the uptake of pre-exposure prophylaxis (PrEP) to stop the spread of HIV. The resilience of these HIV scientists and advocates, who are now backed by the Biden-Harris administration, gives us hope that in 2021, we will close in on the goal of ending HIV.
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Posts may be edited for clarity and/or space. poz.com MARCH 2021 POZ 15
RESEARCH NOTES BY LIZ HIGHLEYMAN
PREVENTION
TREATMENT
CURE
CONCERNS
Cabotegravir injections administered every two months are more effective than daily Truvada (tenofovir disoproxil fumarate/ emtricitabine) for protecting women against HIV. Although Truvada is highly effective when taken consistently, researchers think the injections work better because some people find it easier to adhere to the long-acting regimen. Study HPTN 084 enrolled more than 3,000 women in Africa. They were randomly assigned to receive either long-acting cabotegravir injections every eight weeks or daily Truvada pills. Of the 38 women who acquired HIV, 34 were taking Truvada, and just four were taking long-acting cabotegravir, showing that the injections were 89% more effective than Truvada. These results are comparable to those of HPTN 083, a companion study that enrolled more than 4,000 men and trans women. In that study, cabotegravir injections were 66% more effective than daily Truvada. ViiV Healthcare says injectable cabotegravir for PrEP could be approved by late 2021.
People with HIV who gain weight after switching to an integrase inhibitor may not gain a disproportionate amount of bad fat associated with greater health risks. Increasing evidence shows that people starting HIV treatment or switching antiretrovirals are prone to weight gain. This is especially likely among those who start taking an integrase inhibitor or the new form of tenofovir. Italian researchers found that people who switched to an integrase inhibitor and those who stayed on the same antiretroviral regimen were about equally likely to see their body weight increase by at least 5% (24% versus 28%, respectively). However, a body composition analysis showed that those who switched tended to gain more subcutaneous fat under the skin while actually seeing a reduction in the density of visceral fat within the abdomen. Visceral fat is a greater health concern than subcutaneous fat because it is linked to cardiovascular disease, diabetes and fatty liver disease—and it is harder to lose through diet and exercise alone.
Researchers have succeeded in using a CRISPR-based gene-editing technique to edit an HIV-like virus out of monkey cells. HIV and its simian cousin, SIV, integrate themselves into the genetic material of host immune cells and establish a longlasting viral reservoir, making them extremely difficult to eradicate. The scientists designed an SIV-specific CRISPR-Cas9 gene-editing tool meant to snip viral genes out of infected cells. It was packaged into a carrier virus to transport it to these cells. After three macaque monkeys with SIV received a single infusion of the treatment, it was distributed to a broad range of cells and tissues, including the viral reservoir of latently infected CD4 cells, where it effectively cleaved SIV from those cells. The researchers did not indicate that they had cured the animals, but their findings could represent an advance in the HIV cure field. They hope they will soon be able to advance the treatment, dubbed AAV9-CRISPR-Cas9, into clinical trials of people living with HIV.
Early in the pandemic, small studies suggested people with HIV were not more likely to develop severe COVID-19 or die from it. But some recent studies indicate that HIV-positive people might have a modestly increased risk. New York State Department of Health researchers found that HIV-positive people with COVID-19 had about a 40% higher likelihood of hospitalization, but once hospitalized, their mortality rate was similar. A study in the United Kingdom found that people with HIV and COVID-19 had nearly a threefold higher risk of death, and the difference was even greater for Black people. In another U.K. study, HIV-positive people were younger than HIVnegative people hospitalized with COVID-19, and they had a 69% higher risk of death. And in South Africa, HIVpositive people were more than twice as likely to die of COVID-19. The increased risk appears to be related to higher rates of comorbidities and lower CD4 counts. But other studies continue to see no link between HIV status and worse COVID-19 outcomes.
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Good and Bad Fat
CRISPR Snips HIV
COVID-19 and HIV
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PrEP for Women
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CARE AND TREATMENT BY BENJAMIN RYAN
HIV DEATH RATE DROPS The pace of HIV transmission may have plateaued in the United States in recent years, but the HIV-related death rate fell by half between 2010 and 2017, according to a new study from the Centers for Disease Control and Prevention (CDC). CDC researchers analyzed National HIV Surveillance System data for people ages 13 and older to determine the age-adjusted annual death rate per 1,000 people with diagnosed HIV. When deaths in this data set had an established underlying cause, the researchers determined whether the deaths were HIV-related. Between 2010 and 2018, the annual death rate declined by 37% overall— from 19.4 to 12.3 deaths per 1,000 people with diagnosed HIV. Between 2010 and 2017, the HIV-related death rate declined by 48% (from 9.1 to 4.7 deaths per 1,000). However, during that same period, the rate of non–HIV-related deaths decreased by just 9% (from 9.3 to 8.5 deaths per 1,000 HIV-diagnosed people). Reductions in HIV-related death rates were seen across the board, whether the researchers broke down the data by age, sex or race. “The decline in HIV-related deaths proves that investments in HIV testing, care and treatment are paying off, but we should also protect people from getting HIV in the first place,” says Jonathan Mermin, MD, MPH, the director of the CDC’s National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention.
Antiretroviral (ARV) treatment lessens but doesn’t eliminate HIV’s acceleration of cell aging, according to a recent small study. Mary Sehl, MD, of the University of California, Los Angeles, and her colleagues extracted DNA from 15 people with HIV at three points: six to 12 months before they first began taking ARVs and six to 12 months and 18 to 24 months after they started HIV treatment. The investigators analyzed what are known as cell epigenics, or factors that affect the expression of genes. Looking for key signs of cell aging in particular, they found that compared with a group of 15 age-matched HIV-negative individuals, people with HIV had signs of accelerated cell aging before they started ARVs. And while starting treatment reduced such cell aging, it did not totally eliminate it. This finding may help explain why even HIV-positive people who maintain a fully suppressed viral load over time are still more likely than people without the virus to experience a host of health conditions associated with aging, such as cancer, cardiovascular disease and cognitive decline. “Our study highlights the importance of staying vigilant about age-related conditions that can develop early in people living with HIV,” says Sehl. “Future studies are needed to examine whether stress-reducing therapies, such as exercise or other interventions, can mitigate the impact of HIV on cellular aging.”
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Antiretrovirals Don’t Stop Cell Aging
HIV Treatment Lowers Early Alzheimer’s Risk
NEW TENOFOVIR TIED TO WEIGHT GAIN People who switch to the new form of tenofovir (tenofovir alafenamide, or TAF) from the older one (tenofovir disoproxil fumarate, or TDF) gain significantly more weight than those who switch to TAF from abacavir. Researchers analyzed data from about 975 adults who had suppressed HIV on an integrase inhibitor regimen, switched at least one nucleoside/ nucleotide reverse transcriptase inhibitor and maintained viral suppression a year later. Roughly a third were of normal weight, a third were overweight and 30% had obesity at baseline. Within this group, 85% switched from TDF to TAF, while 15% switched from abacavir to TAF. One year after the switch, people in the TDF-to-TAF group gained an average of about 3 pounds, compared with less than half a pound in the abacavir-to-TAF group. In the TDF-to-TAF group, 40% experienced a gain of at least 3% of their body weight, 26% gained at least 5% and 10% gained at least 10%. In the abacavir-to-TAF group, the corresponding proportions were 27%, 22% and 6%. People in the abacavir-to-TAF group were also more likely to lose weight. Factors significantly associated with at least a 3% weight gain included switching from TDF rather than abacavir, female sex, being underweight or normal weight (as opposed to being overweight or having obesity) before the switch and having a pre-switch CD4 count under 200. TDF is known to have a protective effect against weight gain and blood lipid abnormalities, while TAF lacks this property. Thus, people switching from TDF would lose this protective effect, while those switching from abacavir never would have benefited from it. “These data suggest that differences in weight gain between TAF and TDF are likely driven by removal of TDF-associated weight suppression,” the researchers concluded.
People with HIV have a higher rate of Alzheimer’s disease, including the early-onset form, than those without the virus. However, according to a new analysis, antiretroviral (ARV) treatment appears to eliminate this excess risk. Researchers analyzed data from people with private insurance to parse the risk of early-onset Alzheimer’s among people younger than 65. The database included nearly 75,000 people with HIV who had been enrolled for at least one year during the study period and who were at least 50 years old at any time therein. Forty-four percent of the cohort members were not prescribed ARVs during the study period. Among the group of people with HIV overall, 0.11% had Alzheimer’s, compared with a rate of 0.07% among those without the virus. A total of 0.16% of those with HIV had early-onset Alzheimer’s. However, the Alzheimer’s rate among those receiving HIV treatment was 0.07%—the same as the rate among those without the virus. After adjusting the data to account for various differences between the cohort members, including age, sex and the presence of heart disease, hypertension and diabetes, the study authors found that having HIV was associated with a 56% increased risk of early-onset Alzheimer’s. However, ARV treatment cut the risk of Alzheimer’s by 50% among people with HIV.
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BASICS
BY LIZ HIGHLEYMAN
EATING FOR YOUR HEALTH
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HEALTHY DIET IS ESPECIALLY important for people living with HIV, as the virus can increase nutritional needs, and poor nutrition can worsen disease progression. A well-balanced diet helps maintain energy and strength, encourages a healthy weight, promotes good immune function and improves quality of life. HIV-positive people on antiretroviral treatment can generally follow the same nutrition guidelines as the population at large. But people with HIV are more likely to have coexisting health problems, and dietary modifications can help reduce the risk of cardiovascular disease, diabetes, fatty liver disease and cancer. In December, the federal government released its latest Dietary Guidelines for Americans, which are updated every five years based on the latest scientific evidence. The new guidelines recommend focusing on healthy foods, but they don’t restrict added sugars or alcohol as much as some experts had hoped. A decade ago, the government scrapped the old food pyramid that recommended numbers of servings per day from each food group, replacing it with a more flexible approach. The latest revision is the first to provide guidance by life stage, from birth through old age. Instead of struggling to
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follow complex dietary rules, most people find it easier to look at the big picture and try to choose healthful foods most of the time while cutting back on added sugar, salt and unhealthy fats.
Variety Is the Spice of Life Experts recommend getting most of your nutrients from a balanced diet that includes a wide variety of foods. This should provide an ample supply of vitamins, minerals, amino acids, essential fatty acids and antioxidants. Nutrientrich foods and drinks should make up about 85% of your daily calories, with little leeway for empty calories. The guidelines advise eating fruits and vegetables, whole grains, plantbased proteins (for example, beans and nuts), low-fat dairy products, fish and unprocessed lean meat and poultry. When shopping for bread, pasta or rice, choose brown whole-grain varieties instead of white. From the produce section, select fruits and vegetables with a variety of colors: Green, yellow, orange, red and purple ones contain different nutrients. Plus, some spices (such as turmeric, black pepper and ginger) have anti-inflammatory properties. Limit foods and drinks high in added sugars, sodium and saturated fat. Sweetened beverages are a major
source of added sugars. The latest guidelines say these sugars should make up no more than 10% of your daily calories, but many experts think the limit should be 6%. Water and other fluids are an important part of your diet. Coffee and tea contain healthful bioflavonoids, but cut back on caffeine if it interferes with your sleep. The new guidelines say alcohol consumption should be limited to two drinks per day for men and one drink for women, but some experts think men should stop at one too. Gulping down handfuls of pills won’t make up for a poor diet, but some people can benefit from supplements. People who eat a vegan diet, for example, may need extra vitamin B-12. But more is not necessarily better, and too much can be harmful. The guidelines suggest developing a customized healthy eating plan by starting with personal preferences, incorporating cultural traditions and considering budget constraints. Talk to your doctor if you are having trouble eating, are unintentionally losing or gaining more weight than desired or if you feel like you’re not getting necessary nutrients. A registered dietitian can help you develop a personalized eating plan that meets your individual needs. ■
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Good nutrition is key to overall health and can help you live long and well with HIV.
ASK POZ WELLNESS TIPS FROM POZ.COM
WHO CAN SAFELY RECEIVE COVID-19 VACCINES? N DECEMBER 2020, THE FOOD AND Drug Administration granted emergency use authorization to two COVID-19 vaccines—one from Pfizer and BioNTech, the other from Moderna and the National Institutes of Health. Most people can safely receive the vaccines. Although in clinical trials, many people experienced side effects, such as injection site reactions, fatigue and headache—especially after the second dose—these were usually mild to moderate and lasted only a couple of days. A small number of people who have received the Pfizer/BioNTech vaccine experienced severe allergic reactions. But these rare reactions should not derail the rollout of the vaccines, experts say. The Centers for Disease Control and Prevention recommends that a clinician with access to emergency supplies should be available to manage anaphylactic reactions. People with a history of allergic reactions should be observed for 30 minutes post-vaccination; others should be observed for 15 minutes. Outcomes have not yet been analyzed separately for the HIV-positive
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participants in the Pfizer/BioNTech and Moderna trials. Experts encourage people living with HIV to get vaccinated and say there’s no reason to think the vaccines won’t be safe. Vaccine safety and effectiveness also have not yet been determined for people with cancer or other health conditions. The vaccines are not contraindicated for such individuals—and experts do not foresee problems—but they should talk to their care providers about their specific situations. People with more advanced immune suppression may not respond as well to the new vaccines; this requires further study. Unlike vaccines that contain live virus, these two mRNA vaccines pose no known risk and potentially offer benefit. The vaccines have not yet been studied in children or adolescents. The
Pfizer/BioNTech trial did include a small number of 16- and 17-year-olds, and no safety concerns were reported. This vaccine is authorized for people ages 16 and up, and the Moderna vaccine is indicated for those 18 and older. Trials for teens and younger children are now getting underway or will start soon. The vaccines also have not yet been studied in pregnant people. But again, experts say individuals in this group should not be excluded from vaccination if they are otherwise eligible. Finally, people who have had the new coronavirus—many of whom are unaware of it because they were asymptomatic or weren’t tested—can safely receive the vaccines, and vaccination may offer additional protection beyond natural immunity. —Liz Highleyman
Ask POZ is an ongoing section on POZ.com dedicated to answering general wellness questions. Go to poz.com/ask to read more answers, and email ask@poz.com to submit your questions!
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Loreen Willenberg was identified as an elite controller decades ago.
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LOREEN WILLENBERG MAY BE THE FIRST PERSON TO BE CURED OF HIV WITHOUT A BONE MARROW TRANSPLANT, BUT THERE’S MORE TO THIS ELITE CONTROLLER. BY KATE FERGUSON
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few months ago, Loreen Willenberg stood on the cusp of launching the website for her landscape design business. You could say the moment marked a return to her roots. In 2007, Willenberg, now age 66, walked away from her career as a landscaper and dedicated herself full-time to HIV research and advocacy. True, she had taken on this work for deeply personal reasons and found it immensely satisfying. But eventually, the pull of her innate and instinctive passion for working with the earth became too insistent to ignore.
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IN 1992, AT AGE 38, WILLENBERG TESTED POSITIVE for HIV. She was living in Placerville, California, a small town in the foothills of the Sierra Nevada with a mining history and a notorious reputation for the hang-’em-high style of vigilante justice meted out during the Gold Rush. It wasn’t exactly a welcoming environment in the fearsome early days of the epidemic. In her search to find a doctor she could trust, she called an AIDS education group hotline in San Francisco, which referred her to Bruce Cohn, MD, a physician in private practice in Sacramento, about an hour’s drive southwest of Willenberg’s home. Over the next few years, Cohn regularly tested and retested her blood. Each time, her CD4 T-cells—white blood cells that fight infection in the body—were high, and she remained in good health. While this was obviously great news, it was also perplexing. She wasn’t on treatment (effective treatment didn’t even exist until 1996), and most people in her situation would have seen declines in CD4 cell counts. Cohn soon introduced her to the term “long-term nonprogressor,” which is used to describe people who remain healthy without antiretroviral treatment despite years of living with HIV. “One day, scientists are going to want to study you,” he told her. For the next few years, Willenberg’s lab reports always reached the same conclusion: “Indeterminate. Results indicate long-standing immunity or early phase seroconversion,” and “demonstrates a high level of immunity.” “I began to wonder if I was indeed immune to HIV,” she says. Willenberg spent the next three years in limbo. Her life was an emotional roller coaster. Burdened by a feeling of dread that any day she’d get sick and die, Willenberg bought every book she could find on HIV/AIDS. A subscription from her sister added POZ to her reading list. The magazine eventually changed her life. One day while reading an issue of POZ, Willenberg laid eyes on a small advertisement soliciting participants for a research study in Boston. Individuals were required to have been HIV positive with no symptoms of illness for more than seven years and never to have taken antiretroviral meds. “I was on the phone the next day. I was actually crying when I called my doctor,” she says. “I told him, ‘Oh my God, I think they’re looking for me!’” She hoped she could finally get answers to nagging
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questions such as “Why don’t I get sick like everyone else?” and “What’s different about me?” “I was also very curious about whether or not there were other people in the world like me,” Willenberg recalls. “But how I was going to find them eluded my grasp.” A scientific study offered a possible solution—this was years before the advent of social media—and she hoped that connecting with others would relieve the crushing loneliness that haunted her. Before any of that could pass, Cohn had to ship 10 vials of Willenberg’s blood to the Boston research group for review. Shortly thereafter, Willenberg and Cohn received a letter confirming that the samples had been received and explaining that an assessment was underway. Willenberg didn’t understand most of the medical jargon in the letter. But one part was crystal clear. It stated that she fit the profile of some “elite controllers” who had never had a detectable viral load despite repeatedly showing positive results on ELISA and Western blot assays (at that time, the two tests were routinely administered to confirm an HIV diagnosis). Willenberg exhaled. This was the first time she had heard herself described this way. But, more important, now she knew there were other people like her. IN EARLY FEBRUARY 2005, A RESEARCH FELLOW from the Boston study called Willenberg to share a genetic discovery. Willenberg carried the genetic marker HLAB*5701, which some call the Northern European descent gene. In Willenberg, the gene triggers a brisk response by her immune system, which continues to suppress HIV. She was asked to travel to Boston—on her own dime—to donate fresh blood samples. Short on money, Willenberg reached out to different organizations for funding. Unsuccessful in her efforts, she learned about several other HIV research projects closer to her home. “Within two months, I was enrolled in three studies,” she says. The trio of investigations were underway at the University of California at Davis. Two were headed by Richard B. Pollard, MD, an investigative physician, and the third was led by Barbara Shacklett, PhD, a primary investigator. For Shacklett’s gut tissue studies, Willenberg underwent colonoscopy procedures over a six-year period. Researchers took blood, saliva and tissue samples from her genital area and upper and lower intestines. In December 2005, Shacklett called to say no HIV had been found in Willenberg’s lower intestines, a site that usually harbors the virus. “It would seem that I’m both an extrovert and an introvert, comfortable and excited by the opportunity to have my cells placed under a microscope in order to be studied with an aim to help others,” Willenberg says. “Yet I’m also able to withdraw into my private, quiet life to stay balanced and think about events.” As the year drew to a close, Willenberg received another call from Boston. Funds were now available to fly her
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Willenberg possesses a creativity that demands expression and an artistic flair for working with plants in natural or manmade environments. While immersed in the HIV world, she began to feel the exquisite torture of being torn between two great loves. The new website aimed to help resurrect her original passion. “I have another way to be of service to others, which is to do the work of plants,” Willenberg says. “Working as a landscape designer keeps me grounded, and sharing my knowledge of horticulture and my passion for nature gives me great joy, which I hope my work reflects.”
there. A light snow fell the night she made her first trip to the historic city. Now introduced to the scientific research community in earnest, Willenberg crossed paths with Bruce Walker, MD, the Harvard University researcher heading up the study. He was genteel, soft-spoken and very approachable, she says. “Dr. Walker and his colleagues actually took me under their wing, and I became their student,” she recalls. “That I sit here 15 years later able to speak knowledgeably about their research is due in part to the generosity of their knowledgesharing with me.” A LIFELONG LOVER OF learning, Willenberg found herself armed with a new sense of purpose, especially after Walker told her how important elite controllers are to HIV research. She was surprised to learn how few such individuals exist and how difficult it is for researchers to find them. Determined to locate more elite controllers and advocate for them, Willenberg launched the Zephyr LTNP Foundation Inc. (LTNP stands for “long-term nonprogressor.”) Awareness of the existence of others like her “offered a sense of connectedness and helped release me from the hidden feeling I had carried deep inside that I was a freak of nature,” she says. In mythology, Zephyr is the god of the West wind, a warm, light breeze that ushers in spring. Willenberg adopted the moniker. “People would email me or call me and say, ‘I need to speak to Zephyr,’ and I’d say, ‘I’m here, how can I help?’” she says. As an advocate, Willenberg views herself as a “Mama Bear.” Essentially a one-woman outreach operation, Zephyr referred dozens of elite controllers to several studies conducted by national research organizations. But to do this important work, Willenberg retired in 2007 from the landscape design business she’d reestablished in 2004. “When you get a tap on your shoulder for
“I BEGAN TO WONDER IF I WAS INDEED IMMUNE TO HIV. WHY DON’T I GET SICK LIKE EVERYONE ELSE? WHAT’S DIFFERENT ABOUT ME?” some important purpose, you don’t Loreen Willenberg walk away from it; that’s what the adadvocates vocacy was about for me,” she says. from her home in Sacramento. “There’s not a day that’s gone by that I haven’t thought of my friends who we lost in the early days of AIDS.” She also enjoyed taking part in a worldwide effort. “A littleknown fact about research on HIV controllers,” she says, “is that there are 22 different countries that started cohorts
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WORKING FOR THE ZEPHYR FOUNDATION ALLOWS Willenberg to speak at community events, where she answers questions about elite controllers; she also offers counseling sessions to elite controllers who have reached out to her for advice. “Women especially would call me to say that their doctors were pressuring them to start meds, even though they’re in a unique class,” she says. “This push to put everybody on meds who’s positive for HIV is one of the heartaches that I’ve experienced in working with this community because these doctors were actually calling these women ‘medicine deniers’ and saying that they were being obstinate in their refusal to begin medications because they think we’re flukes.” Adds Willenberg, “By the way, three out of five women who called me about this were African American.” She found the work intense and all-consuming but very satisfying. “I learned that my capacity to love people was greater than I could have imagined prior to being in the spotlight as a person living uniquely with HIV,” she says. “Although I appreciated life before HIV, these past 28 years
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Loreen Willenberg is passionate about her work as a landscape designer.
have made me realize that life is the greatest gift and something for which we need to be grateful.” But eventually, Willenberg experienced another epiphany and realized it was time to disengage from advocacy work. Two years ago, she deactivated all her social media. “Now, I’m kind of just wanting to go back to my old love,” Willenberg says. “What I’m most proud of is my legacy of trees, planted years and years ago in people’s gardens [redwoods that are 80 to 100 feet tall now], and the two associate degrees I earned at 63 years of age.” But advocacy is also woven into Willenberg’s DNA. “I was profoundly touched to learn my efforts to connect members of the HIV controller community to the study in Boston helped the researchers make their recent discovery,” she says. “The wish in my heart is that in my lifetime with what they learned about my case and those of the other 63 elite controllers, that this can be translated into a way to help other people’s immune systems evolve to the point where HIV in the body is destroyed, leaving individuals with no trace of the virus.” Earlier this year, Willenberg collaborated with colleagues on an article soon to be published in a peer-reviewed journal. “What I’d like people to know about me is that I’m a person who cares about others,” she says. “When I think about my life, the one true purpose has been to be of service in the world—to do good deeds.” Of course, this includes Willenberg’s goal to reconnect people to the joy of nature during these challenging times. “There’s nothing like the fragrance of a rose,” she says, “to help you feel that all is right in the world.” ■ This article was written with the support of a journalism fellowship from The Gerontological Society of America, The Journalists Network on Generations and The Gannett Foundation.
(WILLENBERG) COURTESY OF LOREEN WILLENBERG; (HIV) ISTOCK
studying HIV controllers. And the only reason I know that is because I was reading the scientific literature.” Willenberg began devouring study fi ndings in 2005. “The researchers always answered my request for a copy of their PDFs, so I have thousands of them,” she says. After fi ndings from studies Willenberg had participated in began to be published, she gave scientists permission to use her real name whenever her data were presented at conferences. Sacrificing her privacy was a way to bring attention to elite controllers, a group of people making a valuable contribution that Willenberg believes will one day lead to a cure for HIV. “I hope the researchers can translate their recent groundbreaking discovery about the immune systems of exceptional elite controllers to improve the quality of life for people living with HIV and AIDS wherever they are,” she says. “In an ideal world, removing the burden of taking medications to survive would be the best translation.” (Researchers have recently discovered a new mechanism that helps to explain why HIV in elite controllers does not produce new virus. See the sidebar for details on these fi ndings.)
HOW SOME HIV CONTROLLERS CONTAIN THE VIRUS
(RAY) COURTESY OF PWN-USA
A small subset of people living with HIV are able to control viral replication without antiretroviral treatment.
CURRENTLY LIVING IN SACRAmento, Loreen Willenberg, a 66-year-old landscape designer with HIV, is among a group referred to as “elite controllers,” individuals who aren’t on antiretroviral medications, have no symptoms of illness and possess a robust immune system with disease-fighting CD4 and CD8 T-cells that are highly active against HIV. According to the National Institutes of Health (NIH), elite controllers account for less than 0.5% of people living with HIV. “In my case, the folks at the NIH showed me film captured under a fluorescent microscope that showed my cells at work,” she says. “My CD8s homed in on the HIV-infected CD4 cells faster than the cells of most people living with HIV, which is remarkable. I’m like this natural born destroyer of infected cells! It’s crazy stuff!” As Willenberg watched in wonder, her CD8 cells emitted two substances: one, a protein called perforin, poked holes in the infected cell’s wall; the second, an enzyme called granzyme B, slipped through the perforation and signaled the infected CD4 cell to kill itself. “Apparently, my CD8s are among the most potent that they’ve ever witnessed in a human being,” she says. “Within an hour, that process happens, and that cell is dead. The level of production of perforin and granzyme B from within my CD8 cells is several-fold higher than that
of most people living HIV attaches with HIV, and that’s to the what the NIH taught surface of a CD4 cell. me about my case.” But an additional adjective elevates the already elite Willenberg into an even higher tier. Researchers have classified her as an exceptional elite controller because she’s exhibited no progression of HIV for more than 25 years. Willenberg explains that, not counting the minor viral blip that occurred 20 years ago when she developed a bad case of the flu, she’s been undetectable for over 28 years. “No symptoms, no loss of CD4s and a balanced ratio between my CD4 and CD8 cells,” she says.
“CD8 cells are the soldiers that support the general—the CD4 cells—in its fight. The CD8s are actually natural killers.” In July, Willenberg will have achieved 29 years of being undetectable. “I know elite controllers who are in their 35th year or fourth decade of this control, so I think, basically, the story is one of hope,” she says. After a pause, she adds, “So how do we make that happen in other people? Is that a vaccine? God, I hope so!” In a recent study, researchers shed light on how Willenberg and about 60 other elite controllers keep HIV in check. In these individuals, HIV’s genetic blueprint is locked away in the genome of resting immune cells in such a way that it can’t be used to produce new virus. The researchers were unable to find any intact HIV after looking in more than 1.5 billion of her cells. Scientists think that in elite controllers, HIV frequently occupies genetic areas they call “gene deserts” that don’t allow the virus to replicate. The HIV genes there are only inactive viral DNA. “I believe Loreen might indeed meet anyone’s definition of a cure,” says study coauthor Steven Deeks, MD, of the University of California at San Francisco. The question now is whether scientists can develop treatments to enable the millions of typical people with progressive HIV to become more like elite controllers. —KF
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PEOPLE LIVING WITH CHRONIC ILLNESSES ARE COMING UP WITH INGENIOUS COPING MECHANISMS IN THE FACE OF COVID-19.
(PHOTO ILLUSTRATION) DORIOT KIM; ALL IMAGES: ISTOCK
BY CAROLINE TIEN
PERHAPS NO POPULATION HAS BEEN HIT as hard by the COVID-19 pandemic as one that is all but invisible in mainstream media: people living with one or more chronic illnesses. In 2018, they numbered around 133 million in the United States. poz.com MARCH 2021 POZ 29
The term “chronic illness” describes any disease or disorder that significantly impairs an individual’s day-to-day functioning and includes conditions such as HIV, diabetes, heart disease, liver disease and cancer. Regardless of their age or sex, people living with chronic illness are often immunocompromised and require additional medical care. During the coronavirus crisis, that means that they are doubly disadvantaged— more susceptible to COVID-19 and less likely to be able to see their doctors in person due to restrictions. It should come as no surprise, therefore, that many—though not all—such individuals report a sharp increase in their levels of stress, anxiety and depression.
GLORIA SEARSON, ACSW, HAS ALSO BECOME WELLacquainted with breath work in the past few months. She is the founding director and executive director of the Coalition on Positive Health Empowerment (COPE) and has been running self-care workshops during the COVID-19 pandemic. Recent sessions have focused on physical activity, a healthy diet, stress management, grief and loss, posttraumatic stress disorder, sexual health and, of course, breath work. Like many of her clients, Searson lives with HIV, which she contracted along with hepatitis C in the early 1990s
30 POZ MARCH 2021 poz.com
after a period of drug use. She was cured of her hepatitis in 2015 but recently experienced a stroke that has reduced her mobility. Like Hayden, Searson had trouble getting the help she needed because of COVID-19 precautions. Apart from living with HIV, Searson is at high risk for serious outcomes from COVID-19 because of her age, weight and race. As Searson points out, as a “Black [person who is] overweight with a chronic disease,” she is a perfect candidate for the new coronavirus. Her adult children fear for her safety at work, but Searson is committed to the people who rely on COPE for medical education and testing. Many of them have fared badly with regard to their mental health during the pandemic, she says. “Especially in the population that I work with, a lot of them are older, with HIV and dealing with lots of medical problems, so the fear of getting COVID just had them back to isolating like the old days,” she says, referring to the height of the AIDS epidemic. “I know a lot more people are depressed, a lot more people have anxiety, a lot more people are scared.” Once, she even interrupted a suicide. STORIES LIKE SEARSON’S HAVE BECOME MORE common since the emergence of COVID-19. Rebecca Skolnick, PhD, a licensed clinical psychologist and a cofounder of the Manhattan-based psychology practice MindWell NYC, has noticed a spike in the number of people with existing diagnoses—and people in general—reporting suicidal thinking. Those with generalized anxiety disorder or obsessivecompulsive disorder have “actually been handling things almost more effectively because they’ve been in treatment,” Skolnick says, but others have struggled to adjust to the new normal. “People are generally experiencing a lot of loss, whether it’s actual death or health issues or job loss or loss of social life or routine,” she says. Loss, of course, is not a diagnosis, but it “could contribute to depression or exacerbate
(PHOTO ILLUSTRATION) DORIOT KIM; ALL IMAGES: ISTOCK
ADAM HAYDEN IS ONE OF THEM. HE’S A WRITER AND palliative care advocate and father of three who was diagnosed with a terminal form of brain cancer known as glioblastoma about four years ago. He needs regular MRI scans and oncology appointments to monitor the disease’s progression, but scheduling these has been difficult since COVID-19 protocols were instituted. “So that’s been tough,” he says. “I’m used to knowing how I’m doing more objectively on a more regular basis.” The constant fight to convince hospital leadership that his MRI scans and oncology appointments are necessary has wearied him. But at the moment, Hayden’s medical status isn’t the only stressor in the 38-year-old’s life. “I’m at this higher risk of complications from COVID because of the chemo that I’ve had,” he says. (Chemotherapy is known to impair the immune response.) “So all of a sudden, regular interaction with friends and things like that have become more risky. What precautions have they followed? Am I another [link in the] chain of transmission?” To alleviate his anxiety, Hayden journals, attends therapy and does breath work, which refers to a range of breath regulation techniques. Devotees say breath work has a relaxing effect on the body and mind. Hayden’s therapist introduced him to the practice, which has since become an indispensable part of his daily life. Breath work helps him get to sleep and tolerate medical procedures, such as MRIs, “without too much anxiety because these are such anxious times,” he says, alluding to the uncertainty about his tumor.
as the radical left does affect my mental health.” As a resident of Indiana, a so-called red state, Hayden holds minority opinions. Journaling, unlike posting on social media, he says, allows him to process his thoughts and feelings about policy changes and across-the-aisle mudslinging in a way that will not have repercussions on his relationships with more conservative family members, such as his in-laws. If you’re considering giving journaling a try, Jessie Shedden, an author, speaker and consultant who was diagnosed with early-onset rheumatoid arthritis in her 20s, suggests writing down several affi rmations—positive statements such as “I am successful” or “I am talented”—and goals as a starting point. This “keeps me looking forward [for] inspiration rather than being stuck and rehashing negative stuff,” she says.
symptoms that might have already been there.” Skolnick says making time for yourself is important when you’re under a great deal of stress. “So that might mean listening to calming music, lighting candles, watching [lighthearted] online videos, drinking tea or putting on comfortable clothes,” she says. Depending on your ability level, exercise is also likely to help lift your mood. Skolnick recommends trying to “incorporate a walk or run into your day” or at the very least “making sure you’re moving a little bit.” It’s one of the oldest tricks in the book, but it works, according to Gina Dallison. As a lifestyle coach who has been living with relapsing-remitting multiple sclerosis since 2009, she lists yoga and daily walks among her main coping mechanisms. “I have a dog, bless her little heart, and I get outside every day and make sure I’m out in nature,” she says. IF STRIKING A WARRIOR I POSE OR WORKING UP a sweat isn’t your speed, Hayden suggests cracking open a notebook. In addition to practicing breath work, Hayden takes some time every day to journal, which allows him to freely express his frustration with the political climate. “Access to health care [is] a concern, knowing that what I have is a preexisting condition,” he says, citing Republicans’ repeated attacks on the Affordable Care Act. “But I think just the rhetoric, by and large, about this characterization of folks who are calling for more social support and more welfare programs as communists and as hate groups and
AS PSYCHOLOGICALLY BENEFICIAL AS BREATH WORK and journaling can be, it’s important to get out of your head every now and then too. One of the best ways to do this? Maintaining some semblance of a social life. “I find a lot of comfort from being on the screen with people and hearing people’s voices and having them share with one another,” says Gregg Cassin, a community organizer and activist who, like Searson, lives with HIV. Cassin resides in the San Francisco Bay Area, which has some of the strictest masking and social distancing rules in the nation, so he’s been keeping in touch with friends via Zoom. But don’t feel tied down to Zoom or FaceTime, Skolnick says. If digital platforms aren’t for you (and they’re not for a lot of people), try something more old-school: Write letters, send cards or put together care packages. “Emotionally, staying in touch with people is really important. Because [COVID-19] is a global pandemic, it’s helpful to remember that everyone’s going through it,” she says. “Sometimes when people have mental health struggles or even physical health [struggles], they can feel isolated. But in some ways, we’re all dealing with this together.” Regardless of your health status, there’s certainly no shortage of reasons to be stressed, anxious, depressed or frustrated in the COVID-19 era. The new coronavirus has turned supermarkets and airports from economic hubs into danger zones; the numerous instances of police brutality have exposed the flaws in the legal and judicial systems; and the fallout from the presidential election has widened the ideological gap. It’s no wonder that 19% of Americans report that their mental health has worsened. If you’re among them, then taking a couple of deep breaths, putting pen to paper, hitting up a friend, going for a quick walk or jog or all of the above could help lift your spirits. Most important, recognize when you’re engaging in negative self-talk, and mute that little voice in your head. As simple as these activities are, they can make a big difference in your baseline mood. And we could all use a little bit of that right now, regardless of our medical history. ■
poz.com MARCH 2021 POZ 31
HEROES BY ALICIA GREEN
Shirlene Cooper empowers women living with HIV through art.
32 POZ MARCH 2021 poz.com
When Shirlene Cooper was diagnosed with AIDS in 1996, she hardly had time to come to terms with her status. Shortly thereafter, her doctors told her she had other pressing health issues. “I was also diagnosed with tuberculosis, syphilis and cervical cancer,” says Cooper, a 58-year-old HIV activist from Brooklyn. “The hospital told my family I’d be lucky if I made it the next two weeks.” Cooper survived but spent two years paralyzed from the neck down. Then one day, she miraculously started walking again and began her journey of healing. “I started getting a lot better,” Cooper says. “I started going to support groups for women living with HIV and medical issues groups to learn more about my disease.” After a brief stint as an HIV peer educator, Cooper joined the New York City AIDS Housing Network (now VOCAL-NY) as an outreach worker in 2001. The organization is dedicated to ending AIDS, the war on drugs, mass incarceration and homelessness. During her eight years at VOCAL-NY, Cooper became a lead organizer and one of the organization’s co–executive directors. “I came a long way,” she recalls. “I started with handing out flyers and doing needle exchange. I knew nothing about community organizing or advocacy.” Cooper also helped Housing Works, which fights HIV and homelessness in New York City, develop an advocacy group at one of its locations. “I was training people who had substance abuse, homelessness and other issues to step out on the front lines and advocate for themselves,” she explains. In 2013, Cooper learned about Visual AIDS, an organization that uses art to raise awareness about HIV/AIDS and to fight the epidemic. Inspired by her desire to bring together women with HIV, Cooper created the Women’s Empowerment Art Therapy Workshops at Visual AIDS. “It started in my very own living room with eight women,” Cooper says. The workshops incorporate positive affirmations, open dialogue and art to empower women. The group sometimes draws or paints on canvases, stained glass or other mediums. “Every project is different,” Cooper explains. “One time, I had the ladies paint how they saw themselves. We use art as a tool for healing.” Before COVID-19 struck, about 30 women attended the workshops at locations throughout New York City, including museums and HIV organizations. “We started our first virtual group in April 2020,” Cooper says. “It was very powerful because so many women were stressed, and we didn’t know much about the coronavirus.” Over the next several months, Cooper worked with Visual AIDS to send members art kits so they could continue to create together via Zoom. Once word got out about the virtual workshops, more women from around the United States joined. Now, nearly 200 women participate in the group. “We don’t ask you to be a Picasso or Rembrandt,” Cooper says. “You don’t have to bring anything else but your creativity. Just come on in.” ■
BILL WADMAN
Women’s Empowerment
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