THE AT HOME ISSUE

POSITIVELY AWAREAWARE HIV TREATMENT, PREVENTION AND HEALTH FROM TPAN JAN+FEB 2021

ROBERT GAROFALO, MD, MPH, AND FRED

WHEN DOGS HEAL THE TRANSFORMING POWER OF UNCONDITIONAL LOVE

V=V: VIREMIA EQUALS WHO’S ZOOMIN’ EXERCISE THE TESTERS VULNERABILITY WHO? AND NUTRITION ARE BEING TESTED 30

POSITIVELY AWARE

JEFF BERRY EDITOR-IN-CHIEF @PAeditor

ENID VÁZQUEZ ASSOCIATE EDITOR @enidvazquezpa

ANDREW REYNOLDS HEPATITIS C EDITOR @AndrewKnowsHepC

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SCOTT SCHOETTES LEGAL COLUMNIST @PozAdvocate

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TPAN was founded in 1987 in Chicago as Test Positive Aware Network, when 17 individuals living with HIV gathered in a living room to share information and support in response to the HIV/AIDS epidemic. POSITIVELY AWARE is the expression of TPAN’s mission WHO’S A GOOD BOY? to share accurate, reliable, and FRED AND ROB GAROFALO timely treatment information with PHOTOGRAPHED AT HOME anyone affected by HIV. BY JOHN GRESS. READ A DOG’S POWER TO HEAL, BE GREEN. PAGE 20 SHARE OR RECYCLE THIS MAGAZINE.

2 JAN+FEB 2021 | POSITIVELYAWARE.COM/SUBSCRIBE JAN+FEB 2021 POSITIVELY AWARE • VOLUME 31 NUMBER 1 • positivelyaware.com • @posaware

EVERY ISSUE 4 6 33 THE CATEGORY IS... BRIEFLY POZ ADVOCATE New year realness Long-acting injectable It’s a new day living with What’s your biggest hope PrEP effective for HIV in America for 2021? cisgender women. BY SCOTT SCHOETTES COMPILED BY RICK GUASCO Islatravir for PrEP. New report focuses on gay and bisexual Latinos. 34 5 Liquid Tivicay for infants. POSITIVELY AGING EDITOR’S NOTE Pediatric weight Still advocating Finding home for Selzentry. after all these years in a pandemic. BY SAUNDRA JOHNSON

THIS ISSUE 12 26 The testers are being tested U=U, and V=V How HIV testing sites are adapting A look at the vulnerabilities behind to the COVID pandemic. detectable virus. BY MICHELLE SIMEK COMPILED BY ENID VÁZQUEZ 15 30 Surviving and thriving during How women of color living with HIV another epidemic helped win the election The role of diet and exercise Building on the power of the HIV in the era of COVID-19. community, Vote Positive USA is ready BY MARGARET DANILOVICH PT, DPT, PhD for more. BY JD DAVIDS 17 Exercising self-care 32 Relaxation and writing exercises Who’s Zoomin’ who? toward healing. Etiquette for a new era of video chat. COMPILED BY ENID VÁZQUEZ 20 A dog’s power to heal A new book illustrates how a dog’s unconditional love can transform the lives of people living with HIV. BY RICK GUASCO

‘The good news is that it is never too late to get more active and there are solutions to becoming healthier safely in the time of COVID.’ —MARGARET DANILOVICH PT, DPT, PhD, PAGE 15

POSITIVELYAWARE.COM/SUBSCRIBE | JAN+FEB 2021 3 THE CATEGORY IS... NEW YEAR REALNESS What’s your biggest hope for 2021? That’s the question we asked our followers on Facebook, Instagram, and Twitter. They served up some honest feelings and experiences

JOIN IN THE dying by 71%. Yet addressed, [my second hope is for] CONVERSATION despite this, peo- awareness of what it is like to live ple who die from with HIV on meds, so that younger [email protected] an overdose are folks who seem to think ‘it’s no big not tested for deal’ because it’s just a pill a day @posaware HIV, even though don’t get an idea that there are no it could be an side effects, physical and mental, POSITIVELY AWARE underlying or that we have to deal with.” 5537 N. partial cause of —BRANDON WIGGLESWORTH BROADWAY death.” CHICAGO, IL —RENA HUMBERT “I’m really looking forward to life 60640-1405 returning to a semblance of nor- ALL LETTERS, “My hope is for malcy. I honestly can’t wait. The EMAIL, ONLINE life to get back to past year was rough. And we’ve POSTS, ETC. some semblance got a ways to go yet before it starts are treated as of normal. Being getting better.” letters to the editor unless able to see my —JEFFERY PARKS otherwise doctor in person; instructed. going to hospital “In regards to life with HIV/AIDS, We reserve the for normalcy after this because I may be having a heart I hope that there will be continued right to edit for “I am hoping length, style, troubled year. No more, no less. attack; and not catching COVID strides made in treatments that or clarity. Let Just normalcy.” while being hospitalized. Seeing will allow those of us living with the us know if you —MARCELO F. LEVY friends in person and being able to virus to have a better quality of life, prefer not to have share a HUG.” especially for long-term survivors your name or city mentioned. “My hope for 2021 is that there —XIO MORA-LOPEZ like myself, a 30+ year survivor. For will be a bit of joy, happiness, and the general population, I hope that health. I hope that we experience a “My biggest hope, as a 38-year the COVID pandemic will finally GET YOUR little bit of togetherness and unity.” survivor, is that this horrible pan- slow its pace of sickness and death, SUBSCRIPTION —MARK L. GRANTHAM demic will have taught everyone as the vaccine(s) do their job, and OR ORDER that stigma is the wrong reaction that we as humans will do our BULK COPIES “I hope COVID-19 vaccines are to any disease. For too many years, part, by continuing to wear masks, available sooner rather than I walked around feeling like an social distancing, and other mea- later, with little to no side effects unclean leper.” sures, so that life might return to a to anyone with a compromised —KEITH B. DOLE more normal one. Sometimes we immune system; i.e. the HIV posi- just have to live, using the oppor- tive population.” “My biggest hope for the New Year tunities given to us each day, and —JOSUÉ E. HERNÁNDEZ is that people will take COVID-19 moving through and beyond the seriously. We ‘live with’ HIV at this perceived obstacles we encounter SCAN THIS QR CODE with your smart- “More awareness of the risk and point, but a disease that attacks along the way. phone, or go to spread of HIV through drug use. the upper respiratory system is par- “Hope, as they say, is planting positivelyaware. Drug use is rapidly increasing ticularly dangerous for folks with a daffodils in the autumn, so that com/subscribe as is overdose deaths due to the disease in which pneumonia often one might reap the benefits come pandemic. Having HIV increases a is what takes lives. Today, that is my spring.” person’s chance of overdosing and number one priority! Once that is —HAROLD SCOTT

©2021 POSITIVELY AWARE (ISSN: 1523-2883) is published bi-monthly by Test Positive Aware Network (TPAN), 5537 N. Broadway, Chicago, IL 60640. TPAN is an not-for-profit corporation, providing information and support to anyone concerned with HIV and AIDS issues. POSITIVELY AWARE is a registered trademark of TPAN. All rights reserved. Readership: 100,000. For reprint permission, email inbox@tpan. com. Six issues mailed bulk rate for $30 donation; mailed free to those living with HIV or those unable to contribute.

We accept submission of articles covering medical or personal aspects of HIV/AIDS, and reserve the right to edit or decline submitted articles. When published, the articles become the property of TPAN, POSITIVELY AWARE, and its assigns. You may use your actual name or a pseudonym for publication, but include your name, email address, and phone number with your story. Although POSITIVELY AWARE takes great care to ensure the accuracy of all the information it presents, POSITIVELY AWARE staff and volunteers, TPAN, and the institutions and personnel who provide us with information cannot be held responsible for any damages, direct or consequential, that arise from use of this material or due to errors contained herein. Opinions expressed in POSITIVELY AWARE are not necessarily those of staff or TPAN, its supporters and sponsors, or distributing agencies. Information, resources, and advertising in POSITIVELY AWARE do not constitute endorsement or recommendation of any medical treatment or product. TPAN recommends that all medical treatments or products be discussed thoroughly and frankly with a licensed and fully HIV-informed medical practitioner, preferably a personal physician. A model, photographer, or author’s HIV status should not be assumed based on their appearance in POSITIVELY AWARE, association with TPAN, or contributions to this journal.

4 JAN+FEB 2021 | POSITIVELYAWARE.COM/SUBSCRIBE EDITOR’S NOTE JEFF BERRY @PAeditor

Finding home in a pandemic

When I think of home There were a lot of people who volunteered for these I think of a place where there's love overflowing studies, and we had many more study sites than I wish I was home usual. Operation Warp Speed allowed for companies I wish I was back there with the things I’ve been knowing to begin stockpiling doses of the vaccines even before the FDA approved them for use. —From the song, Home, by Charlie Smalls But medical mistrust is still real, especially among in the musical, people of color, and will need to be addressed using effective public health messaging, changing the way “Home isn't a place, it’s a feeling.” we deliver healthcare, and through building back —novelist Cecilia Ahern trust. According to a recent report in the Washington Post, while Black people in the are 1.4 times as likely as non-Hispanic Whites to contract Unless new This issue of POSITIVELY AWARE is our at-home the disease, and 2.8 times as likely to die of it, some policies are issue, and explores some of the changes in our lives may be less likely to take the vaccine. “The root of the enacted to during the past year in the midst of a pandemic. problem lies not in Black communities themselves, Home can represent a place of safety and solitude but in a medical system that has historically dehu- address the for some, especially in the before times. I used to be manized them and continues to do so. The result is structural able to deal with all of the crazy stresses of work and that the history of medical racism in the United States inequities life, knowing that at the end of the day, I could head presents a significant barrier to anything approaching and systemic home to share the evening with my husband Stephen, equitable care in the present and future.” racism that our dog Kylie, and our , to unwind and leave it all Even facing such seemingly insurmountable chal- behind—“Calgon, take me away,” as the old TV com- lenges, we have a new incoming administration that disproportionately mercial for bath suds went. will need to, and is more likely to, address some of affect people I recognize, now more than ever, that I come from these inequities and injustices head on. In the mean- of color and a place of privilege when I say this. If they aren’t time, there are things we can do at home, or wherever marginalized already unstably housed or homeless, millions of we are, while we adjust to the new norm. In this issue communities, people are facing evictions. Food lines formed by cars Michelle Simek looks at how HIV testing sites are of families have stretched for miles in 2020, and the adapting to the pandemic. As this issue went to press, who bear the outlook doesn’t look good for 2021—food programs TPAN, the publisher of POSITIVELY AWARE, was set to brunt of these have lost or stand in danger of losing funding and roll out a new home-testing initiative that includes inhumane turning more people away this year. Many small delivering direct to clients’ homes HIV testing kits, conditions, businesses that we depend upon that form the life- condoms, lube, and other materials and information, many will lose blood of our economy may not survive the COVID-19 as an alternative to coming in to the agency to get pandemic and the shutdowns. Unless new policies tested. Margaret Danilovich explains the role of diet their homes, are enacted to address the structural inequities and and exercise in the era of COVID-19. And poet Natalie businesses, systemic racism that disproportionately affect people Patterson provides ways we can exercise self-care and livelihoods. of color and marginalized communities, who bear the through journaling and other relaxation methods. brunt of these inhumane conditions, many will lose Just like we can’t go home again, we won’t ever be their homes, businesses, and livelihoods. going back to what was normal—nor do we want to. Thankfully there is hope on the way, in the form Look at where normal has gotten us. We need to cre- of preventative vaccines and therapeutic treatments ate a new normal, a more just and equitable society, for COVID-19. The speed in which the Pfizer, Moderna, one that has a place for everyone and a level playing and other vaccines are being developed is truly field for all. Only then will we all finally find a place remarkable, and is due to a number of reasons. Some that we can proudly call home. of them include the fact that we’ve been studying coronaviruses for 50 years, so we have some idea of Take care of yourself, and each other. how they work. Plus there was worldwide collabora- tion between scientists who shared their data with one another, and new methods were employed using mRNA technology, which has never been done before. JOHN GRESSJOHN

POSITIVELYAWARE.COM/SUBSCRIBE | JAN+FEB 2021 5 Truvada, for HIV pre-exposure prophylaxis prophylaxis pre-exposure HIV for Truvada, The HIV Prevention Trials Network (HPTN) (HPTN) Trials Network Prevention HIV The The trial enrolled 3,223 cisgender women ages ages women cisgender 3,223 enrolled trial The 6 18 to 45, in seven African countries. countries. African seven in 45, to 18 study (where participants do now know what what know now do participants (where study given Truvada will be able to choose the injec the choose to able be will Truvada given at preventing HIV in this study of cisgender cisgender of study this in HIV preventing at a LA), (CAB cabotegravir of injection acting announced that one injection eight every dent HPTN 084 Data and Safety Monitoring Monitoring Safety and Data 084 HPTN dent drug still in development, to a daily oral tablet, tablet, oral adaily to development, in still drug designed to continue through 2022 as a blinded ablinded as 2022 through continue to designed (PrEP). Both regimens were highly effective effective highly were regimens Both (PrEP). (NIAID), part of the National Institutes of of Institutes National the of part (NIAID), medication they are receiving). Participants Participants receiving). are they medication results on November 5. The trial was originally originally was trial The 5. November on results CAB LA PrEP to women all over the world, not not world, the over all women to PrEP LA CAB B HIV in cisgender women. cisgender in HIV Institute of Allergy and Infectious Disease Disease Infectious and Allergy of Institute this is the first first the is this NIH, to According (NIH). Health Delany-Moretlwe in an HPTN press release. release. press HPTN an in Delany-Moretlwe Dr. Sinead said apriority,” remains incidence HIV important for in women lowering where Africa important women, the study found. found. study the women, weeks showed strong efficacy for preventing preventing for efficacy strong showed weeks to be highly effective for cisgender women cisgender for effective highly be to a shown has trial clinical alarge-scale time tions as the drug becomes available. becomes drug the as tions be unblinded going forward after reviewing the the reviewing after forward going unblinded be just Africa. Africa. just Long-acting injectable PrEP effective for cisgender women long-acting injectable form of HIV prevention prevention HIV form of injectable long-acting JAN+FEB 2021 | POSITIVELYAWARE.COM 2021 JAN+FEB oard (DSMB) recommended that the study study the that recommended (DSMB) oard “The results from HPTN 084 are incredibly incredibly are 084 HPTN from results “The The HPTN 084 study compared along- compared study 084 HPTN The The demonstrated efficacy will help bring bring help will efficacy demonstrated The On the strength of the results, the indepen the results, the of strength the On H PTN 084 is sponsored by the U.S. National National U.S. the by sponsored is 084 PTN BRIEFLY ENID VÁZQUEZ . -

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@ Johannesburg, said, “We know that adherence adherence that know “We said, Johannesburg, of the 38 women in the study who had had who study the in women 38 the of chair for HPTN 084 and director of research research of director and 084 HPTN for chair onstrated efficacy for cisgender men and and men cisgender for efficacy onstrated study and overall low incidence rate in both both in rate incidence low overall and study given CAB LA (for an incidence rate of 0.21%) 0.21%) of rate incidence an (for LA CAB given acquisition.” both demonstrate clearly study the of arms The (1.79%). Truvada given been had 34 and been had four up, follow during HIV acquired also continues. able formulation of rilpivirine (Edurant, RPV). RPV). (Edurant, rilpivirine of formulation able research that and aresult as early unblinded acting CAB is a very important additional HIV HIV additional important avery is CAB acting long- as such product injectable effective an in Witwatersrand the of University the at Institute HIV and Health Reproductive Wits at and the research staff, as this study would not not would study this as staff, research the and drugs were highly effective at preventing HIV HIV preventing at effective highly were drugs reported higher-than-expected that, “The PrEP for superiority declared team research ment, in combination with a long-acting inject- along-acting with combination in ment, prevention option for them. We are grateful grateful We are them. for option prevention in late 2017. In the data presented in November, November, in presented data 2017. the In late in also was study That trial. 083 HPTN the in with CAB LA based on statistical criteria. NIH NIH criteria. statistical on based LA CAB with t to prevention.” HIV level of adherence to [Truvada] throughout the the [Truvada] to throughout adherence of level to a daily pill continues to be challenging, and and challenging, be to continues pill adaily to to the women who volunteered for this study study this for volunteered who women the to have been possible without their commitment commitment their without possible been have ransgender women who have sex with men, men, with sex have who women ransgender ENIDVAZQUEZPA The Phase 3 HPTN 084 trial was launched launched was trial 084 3HPTN Phase The The drug earlier last year had also dem also had year last earlier drug The CAB LA is also being studied for HIV treat HIV for studied being also is LA CAB Dr. Delany-Moretlwe, who is the protocol protocol the is who Dr. Delany-Moretlwe, - - Africa, and this clinical trial trial clinical this and Africa, A on HIV globally until we we until globally HIV on c on focus its through effort & Bill the with collaboration Merck a announced class. oped by Merck & Co. for HIV HIV for &Co. Merck by oped clinical study in women and and women in study clinical co-director of the Research Research the of co-director and scientist research clinical seeks to help advance this this advance help to seeks scheduled to enter Phase 3 Phase enter to scheduled studied studied groups groups as gay men. gay as adolescent girls with high high with girls adolescent also being being also drug to regulatory approval. approval. regulatory to drug portionately at risk on this this on risk at portionately uled to begin this year in sub- in year this begin to uled Care Training Program at at Training Program Care risk for HIV acquisition. The The acquisition. HIV for risk was islatravir oral monthly S Melinda Gates Foundation for It is a nucleoside reverse reverse anucleoside is It HIV acquisitions take place. place. take acquisitions HIV In another PrEP study, once- study, PrEP another In PrEP is is PrEP Merck. Institute, Research Medical Kenyan The of Research H inhibitor (NRTTI), a new drug drug anew (NRTTI), inhibitor in other other in from release apress in turn the tide on the virus in in virus the on tide the turn women, who remain dispro remain who women, women, especially younger a bring to used is which trial, 3pivotal Phase the of funding tigator Professor Elizabeth Elizabeth Professor tigator transcriptase translocation translocation transcriptase t new world’s the of half than the Center for Microbiology Microbiology for Center the with particu with lar vulnerability to to vulnerability lar IMPOWER 22 trial is sched is trial 22 IMPOWER Islatravir for PrEP for Islatravir reatment as well as for PrEP. for as well as reatment ontinent,” trial said inves nne Bukusi, PhD, principal principal PhD, Bukusi, nne aharan Africa IV acquisition, such acquisition, IV “We will not turn the tide tide the turn not will “We Islatravir is being devel Islatravir - , where more more , where

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PHOTO: Aqui Como Soy: New report focuses on gay and bisexual Latinos Liquid Tivicay for infants ViiV Healthcare, a pharma- community-based research, reflects their needs, Two pharmaceutical manu- ceutical which facilitated by the Latino identity, and language, facturers specializing in the focuses on drug development Commission on AIDS. The and making of generics are bring- in HIV treatment and pre- report examines five key ●n Resilience is activated ing a strawberry-flavored vention, has released a new issues that arose: through networks and HIV medication for pediatric report about gay and bisexual ● services by and for Latinx use in resource-poor coun- Latinos living with, or vulner- n Family and community men, especially youth tries. The announcement able to, HIV. are central to men’s lives was made by the Clinton “For Latinx men, including and identities, shaping The report’s findings will Health Access Initiative and cis and transgender men, their health and wellness be incorporated into ViiV’s Unitaid on World AIDS Day, who have sex with men for better or worse Positive Action for Latinx December 1. (MSM), navigating sexual and n ● Interruptions in care hap- Men program, “a community- The generic formulation cultural identity amid social pen for many reasons giving initiative.” of the powerhouse medica- pressures poses significant beyond men’s control LISTEN to some of the tion dolutegravir (DTG, brand challenges to accessing n ● Anti-immigrant sentiment men from the report tell name Tivicay) will be dispers- healthcare,” the report says. and anti-immigrant laws their stories and read the ible as a liquid. According to “Latinx communities in have a powerful effect on report itself, available the two global health initia- the U.S. face many of the men’s health in Spanish and English; tives, generic strawberry same challenges as other ● n Men want diverse and viivhealthcare.com/en-us/ dolutegravir for kids will cost communities of color, includ- responsive care that positive-action-for-latinx-men. $36 a year, a sharp discount ing poverty, poor access from the $480 generic adult

: SERGIO DE PAULA/UNSPLASH DE SERGIO : to education, poor housing, ●An estimated 186,900 dose. There are 1.7 million and unreliable or unsafe Hispanic/Latino gay and children around the world public transportation, bisexual men were living living with HIV, said the all of which impact with HIV in the United States announcement, with only half health outcomes for ● receiving antiviral therapy. AQUI COMO SOY Latinx MSM. On An estimated 80% of “Children in low- and top of this, anti- all new diagnoses among middle-income countries immigrant laws Hispanics/Latinos were often wait years to access spread fear and among gay or bisexual men the same medications as insecurity that adults, hindering their quality keep these men SOURCE: CENTERS FOR of life, or even resulting in and their com- DISEASE CONTROL preventable deaths,” Unitaid AND PREVENTION HIV munities from SURVEILLANCE REPORT executive director Philippe utilizing life- 2018 Duneton said. “This ground- saving services breaking agreement will bring including healthcare. ● quality assured dispersible When they do attempt In 2016, about 1 in 3 DTG to children living with to access care, many Hispanic/Latino gay and HIV, helping them to remain

PREP: ISTOCKPHOTO • ISLATRAVIR: MERCK • • MERCK ISLATRAVIR: PREP: ISTOCKPHOTO • experience fear, discrim- bisexual men living with HIV on treatment and saving ination, and rejection did not have undetectable thousands of lives.” from service and clinics,” viral load Tivicay tablets are avail- the company reported in a able in the U.S. for children statement. SOURCE: weighing at least 77 pounds, “Here As I Am” (“Aqui CENTERS FOR DISEASE but not for years after adult CONTROL AND PREVENTION Como Soy”) features find- HIV SURVEILLANCE DATA therapy came on the market. ings based on firsthand (JUNE 2019) Development of pediatric accounts gathered therapy lags behind adult through treatment. Dolutegravir is also contained in the single- tablet regimens Dovato, Juluca, and Triumeq. It is

VÁZQUEZ: JOHN GRESS JOHN VÁZQUEZ: recommended for first-line

POSITIVELYAWARE.COM/ SUBSCRIBE | JAN+FEB 2021 7 BRIEFLY

Team discusses how all mem- Deaths due to HIV bers of a health care team drop by half New director is a sign of recovery for CDC can contribute to care. “What was once con- The overall number of deaths Rochelle Walensky, MD, sidered a deadly disease, in the U.S. directly related to MPH, began her career HIV is now a manageable, HIV among people living with in the mid-1990s chronic condition that allows the virus was cut nearly in fighting the HIV/AIDS a nearly normal lifespan, half between 2010 and 2018, epidemic. Chosen by thanks in large part to according to an analysis by president-elect Joe the Health Resources and the U.S. Centers for Disease Biden as director of Services Administration’s Control and Prevention (CDC). the U.S. Centers for (HRSA) Ryan White HIV/ But decreases weren’t as sig- Disease Control and AIDS Program (RWHAP) nificant for women, people of Prevention (CDC), she'll and expanded access to color, and people who live in play a key role in the HIV treatment services and the Deep South, underscor- fight against COVID-19 medical advancements,” ing health disparities. and managing the larg- wrote Laura Cheever, MD, The rate of deaths est vaccine campaign ScM, of HRSA’s HIV/AIDS directly related to HIV in the country’s history. WALENSKY Bureau. “In 2018, 46.1% of dropped 48.4 percent— Before her selec- RWHAP clients were aged 50 decreasing from 9.1 per tion, she was the Chief years and older. Of RWHAP 1,000 people living with of Infectious Diseases at “In selecting @RWalensky, clients aged 50 years and HIV to 4.7 deaths per 1,000 Massachusetts General Biden has chosen one older receiving HIV medi- people living with HIV Hospital (MGH) and a of the most respected cal care, 91.5% were virally (PLWH). The rate of non- professor of medicine at infectious disease docs in suppressed.” GO TO hiv.gov/ HIV-related deaths also Harvard Medical School. An the world,” tweeted Jen blog/hrsa-s-hivaids-bureau- decreased, by 8.6%—from expert HIV/AIDS clinician Kates, a senior vice presi- releases-two-new-aging-hiv- 9.3 in 2010 to 8.5 in 2017. passionate about health dent at the Kaiser Family reference-guides. CDC researchers examined care equity and access to Foundation. “She has a data from the National HIV treatment, she helped lead long history working on HIV IAS leads its second Surveillance System. MGH’s fight against COVID- and has, in the past year, COVID-19 conference In 2017, more than 16,000 19 since almost the start of become a tour de force in people living with HIV died— the pandemic. addressing COVID. She’ll The International AIDS about 5,500 of those deaths Her arrival comes after take the helm of CDC at Society (IAS) takes on were attributed to the virus. a challenging time that perhaps its most critical COVID-19 once again in “Continued efforts saw the CDC sidelined by moment.” a conference focused on in diagnosing HIV early, the Trump administra- Walensky replaces prevention. “Many HIV pro- promptly initiating treatment, tion, which often forced Robert R. Redfield, MD, who fessionals are leading the and maintaining access the agency to put political was named CDC director in COVID-19 response in their to high-quality care and considerations ahead of April 2018; the appointment respective countries and treatment are necessary medical science, tarnishing does not require Senate conducting related preven- for continuing progress its reputation and sinking confirmation. tion research,” IAS president in reducing deaths and morale among its doctors —RICK GUASCO and conference co-chair eliminating differences and researchers. Adeeba Kamarulzaman said across populations,” CDC in a statement. “After the reported in its summary. first IAS-hosted COVID-19 “This is not just about HIV therapy in the United drug package insert for new Conference in July 2020, the drugs. It’s the entire States and for use by preg- data and changes added I am excited to announce the structure that supports nant women (under most by the U.S. Food and Drug second iteration that people,” said Dr. Jeanne circumstances). Administration (FDA). will help shape the Marrazzo, Director of global pandemic Infectious Diseases Pediatric weight HRSA guides response.” The at the University for Selzentry for aging with HIV conference, of Alabama in to be held Birmingham, in a The minimum weight needed Two new reference guides to virtually Times by pediatric patients before help medical providers treat February 2, article about they can be given Selzentry patients aging with HIV were focuses on the rate drop. (maraviroc) HIV antiviral released in November. prevention- “Sometimes that’s has been lowered from 22 Incorporating New related sci- lost in the dialogue.” pounds (10 kg) to 4.4 pounds Elements of Care highlights ence, policy, and The results were (2 kg). Pediatric dosing is screenings for common practice. published in the CDC’s based on weight. Selzentry health and social needs of For more information, November 11 Morbidity and is not recommended for people aging with HIV. Putting or to register GO TO covid19. Mortality Weekly Report:

pre-term neonates. See the Together the Best Health Care iasociety.org. bit.ly/MMWR-2020-11-20. PHOTOGRAPHY MGH JEFFREY ANDREE, WALENSKY:

8 JAN+FEB 2021 | POSITIVELYAWARE.COM/SUBSCRIBE Report recommends a ‘framework’ of support for aging with HIV Daskalakis takes on CDC’s HIV prevention New York City’s deputy A new report highlights the primary care providers commissioner for disease needs of people age 50 and improve their knowledge control has been named the over who are aging with of HIV in older people, new head of HIV preven- HIV, and offers recommen- including testing, preven- tion for the U.S. Centers dations to care providers. tion and sexual health for Disease Control and Produced by Grantmakers in counseling. Prevention (CDC). Aging (GIA), Moving Ahead n Incorporate principles of Dr. Demetre Daskalakis Together: A Framework for trauma-informed care became the director of Integrating HIV/AIDS and and increase cultural the Division of HIV/AIDS Aging Services focuses on competence of providers Prevention of the CDC’s isolation and stigma, the need and staff in all care National Center for HIV/ for holistic and integrated settings, including senior AIDS, Viral Hepatitis, services, and updating gov- centers and long-term STDs, and TB Prevention ernment policies. care facilities. (NCHHSTP) in late “People living with HIV n Help HIV specialists gain December. Known for his age into a sort of no-man’s expertise in geriatric work in creating and lead- land that can be a lonely and issues including multiple ing many HIV and STI pro- potentially dangerous place,” co-existing conditions, grams in New York City, Dr. said John Feather, PhD, GIA’s cognitive impairment, and Daskalakis is credited for DASKALAKIS CEO. “Aging services and HIV HIV’s effect on aging. reducing HIV rates in the services both deliver excel- n Co-locate and coordinate city to historic lows. in Boston. He completed lent care but have no history HIV and aging services, “We are excited for him clinical infectious dis- of working together, and including case manage- to bring this leadership ease fellowships at the people aging with HIV can ment and social services. and experience to DHAP Brigham and Women’s get lost. The need for greater to advance meaningful Massachusetts General coordination, expertise The report also includes research, guide surveillance Hospital combined program, sharing, and inclusion has first-person reflections, and programs, support receiving his master’s from been strongly affirmed by video interviews, and illustra- and implement effective the Harvard T.H. Chan leaders in both sectors, and, tions by older people living policy, and ultimately School of Public Health. He importantly, by people who with HIV; it was supported by prevent HIV infections has written or co-authored are themselves aging with a grant from Gilead Sciences. and increase health equity more than 50 scholarly arti- HIV/AIDS.” GIA is a national membership across the United States,” cles, earning awards from Recommendations were organization of philanthro- said NCHHSTP director the Treatment Action Group, informed by leaders in the pies. For more information Jonathan H. Mermin, MD, the Latino Commission on fields of HIV and aging, and and a downloadable PDF of MPH, in a statement. AIDS, and GMHC. through a virtual summit. the report, GO TO giaging.org/ As deputy commis- He began his medical Among them: initiatives/hiv-and-aging. sioner for the Division of career as an attending n Help geriatricians and —RICK GUASCO Disease Control at the physician in New York’s NYC Department of Health Bellevue Hospital, where he and Mental Hygiene, Dr. spearheaded several public Daskalakis directed the health programs focused on city’s infectious disease community HIV testing and control programs, including prevention. He has been a HIV, tuberculosis, sexu- staunch advocate, address- ally transmitted infections, ing stigma, key social vaccine-preventable determinants of health, and diseases, and general com- making prevention options municable diseases. He was such as PrEP accessible the department’s incident and affordable to all. commander during the “We have the tools at our city’s measles outbreak in hands to prevent infection 2018–2019, and for the cur- and to keep people living COVID-19 pandemic. with HIV healthy,” he said. Dr. Daskalakis, who grew “Our barrier to achieving up in Arlington, Virginia, this vision is no longer sci- attended NYU’s School of ence; it is systemic racism, Medicine, completing his sexism, homophobia, and ‘I’M NOT DYING FROM IT, I’M LIVING WITH IT’ (2017), residency at Beth Israel transphobia.” BY BETSY PONCÉ IS AMONG THE IMAGES BY PEOPLE Deaconess Medical Center —RICK GUASCO

DASKALAKIS VIA TWITTER LIVING WITH HIV TO ILLUSTRATE THE REPORT.

POSITIVELYAWARE.COM/SUBSCRIBE | JAN+FEB 2021 9 THE TESTERS ARE BEING TESTED How HIV testing sites are adapting to the COVID pandemic BY MICHELLE SIMEK

“I love my job—I’m an emotional Pisces. I’m a fixer and I’m working all of the time. If I’m available, I will be there for my clients. I’m not even close to burn-out.” —TONY CHRISTON-WALKER, AIDS ALABAMA CHRISTON-WALKER WITH HIS BOYFRIEND’S DOG, CHIEF

In March, 2020, the hustle and bustle cancer-free for the last five years. He not home of a young Black man who has sex of life in the United States came to an only fights for his own health, he also with men who wanted an HIV test. He abrupt halt due to the explosion of the fights for the health of people of color lived with his mother and grandmother, COVID-19 pandemic. Workers were in Birmingham. “We are in the buckle of though, so Tony and his colleague had sent home with laptops and notepads the Bible Belt. It’s hard to talk about HIV to “sneak in when the coast was clear.” and pens and files crammed into their down here.” Luckily, the client’s room was right by work bags. Toilet paper was scarce and Tony’s program “never shut down the front door. “His grandmother was disinfecting wipes were scarcer. Dry but we scaled back” and added face in the back, watching The Price is Right goods like rice and pasta were gone. masks and temperature testing at the and neither his granny or his mom had And COVID tests were hard to come by, doors. AIDS Alabama’s testing program any clue that we had even been there. regardless of what then-President Trump serves mainly Black and Latino men who Fortunately, he remains HIV-negative, kept insisting. have sex with men (MSM). Their client because if he needed treatment, I don’t However, very quickly, the frontline breakdown is approximately 90% Black, know how we would get him out of that workers of the AIDS pandemic—HIV 5% Latinx, and 5% white. While clients apartment.” testing counselors—knew that they had are able to enter AIDS Alabama facilities, During the first week of November to get back to their jobs. This new pan- staff also provide in-home HIV testing 2020, AIDS Alabama started testing for demic didn’t negate the old one. People and drive a nondescript car to clients’ COVID. Staff conducts testing at their were still getting HIV or didn’t know that homes. In those cases, his team goes sites and in people’s homes, “if we need they already had it. Testing programs in pairs, “both for the safety of the staff to in order to eliminate those barriers.” had to take stock and figure out how to and of the client.” Pre-COVID, “we were Quite ironically, Tony was interviewed serve their communities without putting testing 30–40 people a week; now we are for this article on Tuesday, November 10, their staff at risk. Remarkable stories of testing 30 a month.” Although on one and tested positive for COVID on Friday. commitment and resilience can be told November day, they had 11 walk-ins for The night before testing positive, he had from every corner of the country. And an HIV testing, something that Tony calls watched Avengers: End Game with his actual at-home COVID test kit received “remarkable.” And “people test because family—his husband, son, and grandchil- emergency authorization from the U.S. they are scared. They put into their mind dren—and some family members went Food and Drug Administration (FDA) in that if they only sleep with one person, dancing later. Tony was shocked “and November 2020. instead of the whole city, they will be mad! I’ve been being very careful!” At safer.” But five people tested positive work, he had been using PPE and stay- AIDS Alabama for HIV in the past five weeks at one of ing six feet apart from coworkers and BIRMINGHAM, ALABAMA AIDS Alabama’s sites. Their reactions clients since March. Thinking it was a to their HIV diagnosis during COVID are false positive result, a colleague went Tony Christon-Walker, Director of much the same as pre-COVID. “They get to his home to retest him. Frustratingly, Prevention and Community Partnerships that lump in their stomach. Some cry “that bright red indicator showed up at AIDS Alabama, is a fighter. Diagnosed themselves into a puddle. Some blame again.” No one else in Tony’s family with HIV in the mid-1990s “when all other people. Some live, and even thrive, tested positive for COVID and he quar- of my friends were dying,” he is also a with it.” antined himself from his husband and

colorectal cancer survivor and has been Tony and a colleague went to the son. “I feel kind of guilty,” he says. “How COURTESYPHOTO CHRISTON-WALKER TONY OF

12 JAN+FEB 2021 | POSITIVELYAWARE.COM/SUBSCRIBE did this happen to me? Everyone else is transmitted infection (STI), and COVID dying and I feel just fine. It doesn’t seem testing. Approximately 40% of their COVID testing at home fair.” He feels the same sense of guilt clients are white and 60% are people when he goes to his follow-up appoint- of color. About 55% are male and 45% LAST NOVEMBER 17, the FDA issued an ments at the oncologist’s office and sees female (this includes people who are emergency use authorization (EUA) the very sick people in the waiting room. transgender). Since March, Howard for the very first rapid, at-home COVID Tony specifically wanted to include his Brown’s testing programs have “tempo- test, called Lucira. Previously, anyone COVID diagnosis in this article, “because rarily gone backwards”—meaning that who was worried could purchase a if it can happen to me, it can happen there are a limited number of clinics COVID test-kit online (at various price to anyone.” And while he has no symp- that are open, and those that are “have points), test at home, and send the kit toms, “just because I’m okay, it doesn’t moved primarily to telehealth.” Their to a lab for processing (which meant mean that you’re okay or will be okay.” smaller clinics “have lower capacity to quite a bit of waiting time for the Tony quarantined himself, worked from see clients but those clients are still sexu- results). The new test is a nasal swab home, did not develop the classic COVID ally active—even during COVID.” Across and is only available via prescription symptoms, and returned to his office the Howard Brown clinic system, HIV from a medical doctor. The Lucira test on December 1st. “But the [political] testing numbers fell by 1,000–2,000 each can be self-administered at home by left only talks about the deaths, the month from March through October. anyone who is at least 14 years old; right only talks about how many people Although the number of in-person clients the test can also be used in medical have it but don’t have symptoms, there decreased, their seropositivity rates had settings (such as hospitals, urgent is no discussion in the middle. I almost spikes. In May and September, their HIV care facilities, and emergency rooms). feel like COVID is a sentient being that positivity rates for 2020 were higher than After collecting the swab, it is swirled decides what it is going to do with some- in 2019. In May 2019, the positivity rate in a vial that is placed inside the test body. I didn’t have those symptoms but was 0.36% compared to the following unit. In approximately 30 minutes, the I felt it when I got it and felt it when it May’s 0.81%. And in September 2019, the results are visible in the lit display. If left me.” As of the writing of this article, positivity rate was 0.26% vs. 0.99% in a positive result appears, it is recom- another AIDS Alabama employee tested September 2020. mended that the patient immediately positive for COVID and has lost their But Howard Brown is not letting contact their medical provider and sense of taste and smell. COVID win the battle against HIV. In self-quarantine. FDA Commissioner April 2020, the agency started offer- Stephen M. Hahn, MD, stated that, ing free at-home HIV testing via their “While COVID-19 diagnostic tests CHICAGO, ILLINOIS website, mailing out OraQuick In Home have been authorized for at-home HIV test kits to 20 states across the U.S. collection, this is the first that can be Antonio Elizondo is the Manager of (as well as to Puerto Rico and Ontario, fully self-administered and provide Reproductive Health Outreach Services Canada). This particular kit tests for results at home.” At the time of this at Howard Brown Health. A network of HIV antibodies present in the mucous article, various questions remained clinics across Chicago, Howard Brown membrane of the mouth and involves an unanswered about how the test will provides medical services to the LGBTQ oral swab. Along with the standard list of be distributed, its cost, and whether community, including HIV, sexually HIV/AIDS resources included in the test health insurance will cover it. kit, Howard Brown includ- —MICHELLE SIMEK ed information about their own HIV testing and counseling program results. But that doesn’t necessarily and how to contact their mean that no one has had a reactive counselors. They also sent result. A client could have contacted a out free safer sex packets local resource or one of the national (again, via online order) resources included in the kit (or, they which include condoms might not have reached out to anyone at (receptive, insertive, and/ all, which is concerning). or latex-free), lube, dental In September, Howard Brown dams, cloth face masks, changed their HIV and STI testing and safer injection kits protocol yet again, working with a third- (works but no needles). party vendor, MyLabBox. The company From April through ships, receives, and processes HIV and September, “we filled STI tests and informs Howard Brown orders for 377 OraQuick In of any positive results. Prevention staff Home HIV test kits, 6,350 are then able to be proactive, reaching condoms, 2,900 lube out to patients directly and linking them packets, 226 cloth masks, to care and treatment. Test kits remain and 112 safer injection free and can be ordered online (STI tests kits”—an impressive set are now only shipped within the state of of numbers. At the time Illinois so that a licensed medical pro- of this article, Howard vider can prescribe treatment). Brown had not received According to Michelle Evers, NP, any contact regarding Assistant Site Medical Director, “I think positive at-home HIV test that COVID-19 has had a direct impact on people’s access to care. Many ELIZONDO OUTSIDE patients are apprehensive of coming THE TENT WHERE TESTING onsite to engage in services. Also, some

PHOTO BY CARLOS FRAGOSO IS CONDUCTED people are not aware of, or have issues

POSITIVELYAWARE.COM/SUBSCRIBE | JAN+FEB 2021 13 with, our telemedicine service line. A In March 2020, Common Ground saw “a from resigned to freaked out. Most large majority of our newly diagnosed huge decrease in testing numbers—half people who test positive have a lack of patients are young MSM of color. Many the rate compared to what we normally education and need the counseling and of them have had interruptions in their do. We work with a risky population. education that comes with HIV testing. PrEP refills or appointments. They have They test out of a situation—something Generally, youth are not aware that there lost insurance and do not have the specific happened that scared them,” are meds to treat and control HIV.” And resources to understand how to navigate says Heller. their HIV status may not be a priority our public health systems. This creates Common Ground has had to adjust in clients’ hierarchy of needs. Food and a need for us to try to reach people of their testing protocols since March. shelter may come first. The Medical color during this time.” Previously, they would test and counsel in Care Coordination Team (MCC) at VHC That being said, “Howard Brown cur- a “small, intimate space.” But “the rules started delivering medications and food rently links 87% of patients to care within in Los Angeles have changed so much. to clients who were nervous about leav- three months of their HIV diagnoses, as Now we test in a larger space with more ing their home during COVID. One newly per the guidelines set by the National room and oxygen.” Sadly, the testing housed client did not have anything to HIV/AIDS Strategy,” says Antonio. team “can’t spend as much time with put into her new residence. Common Howard Brown has been testing for clients as they used to. This is a bummer Ground staff came together and donated COVID since the safer-at-home orders because staff want to take the time began in March. The agency “usually to get to know them and so that the tests quickly and in person, out in the clients tell us the truth [about risk community under tents, which reduces factors].” Currently, everyone who travel and indoor contact.” To reach wants an HIV test must have their the communities hit hardest by COVID, temperature checked and answer Howard Brown partners with local symptom questions at the door of community-based organizations, such the friendly ASO. Heller’s program as Project Vida, which serves the Latinx discussed passing out home HIV test community. “There is a high utilization kits but decided against it because a of COVID testing at the Latinx site and a large percentage of their clients are high COVID positivity rate,” said Antonio. homeless and therefore might have “And there are higher infection rates per barriers to accessing the post-test household. Culturally, Latinx families resources included with the kits. are used to seeing each other and being COVID has also forced changes together. It is hard for them to adjust to their syringe services program. and accept the new normal.” In the com- Previously, this service would take ing freezing winter months in Chicago, place in an exam room, and staff tent testing will be unpopular at the “could take their time with each cli- very least, and probably not even pos- ent and build a layer of trust with sible. Howard Brown Health is already them.” Now the SSP is out in the considering their next pandemic pivot: open and goes much faster, making drive-through testing. those important provider-client rela- Sadly, Antonio’s own family will have tionships harder to build. Common to accept the “new normal” for the Latinx Ground staff wear both masks and community. His maternal grandmother face shields, “and the people who passed away from COVID-related com- inject drugs (PWID) population [are] plications over the Thanksgiving holiday put off by those barriers,” a blow to weekend. His grandfather doesn’t have a program that “has grown every COVID, so they have to keep him, and year for the past four years.” And other vulnerable family members, safe. overdoses in Los Angeles increased At the time of this article, only 10 people in 2020, which could be due to were allowed to gather for a funeral or COVID-related stress or the pres- memorial in Illinois. Antonio is concerned ence of fentanyl in the drugs that HELLER AT THE ENTRANCE that, even with restrictions, the “natural people consume. TO COMMON GROUND reaction is to hug or touch somebody,” In contrast to other testing and SSPs which could lead to COVID transmission. across Los Angeles, Common Ground’s couches and other items that she needed A Zoom memorial is being planned for clients tend to be White, straight, home- in order “to make her home a home.” this normally close-knit family. less men. They test more people during “We go the extra mile,” says Heller. the summertime, which makes sense as “We care about our clients. They have Common Ground the agency is located a mere six blocks experienced so much trauma and anxi- VENICE, CALIFORNIA from the famous Venice Boardwalk. ety and fear. We are not here by force, Their seropositivity rate is generally 1–3 we are here by choice.” Jacob Heller, the Prevention Supervisor per month. When someone is diagnosed at Common Ground, has worked at the with HIV, “we just walk them next door MICHELLE SIMEK has worked in HIV/AIDS agency for six years. In addition to HIV- to VHC” for HIV treatment and ancillary for more than 20 years. She currently related social services, Common Ground services and “teach them to be a cham- works at the UCLA Center for Clinical offers testing for HIV, hepatitis C (HCV), pion of their own health.” AIDS Research and Education (C.A.R.E.) and STIs, along with a robust syringe ser- Similar to what’s being seen at and is a popular HIV/AIDS educational vices program (SSP). The Venice Family AIDS Alabama and elsewhere, client presenter, both locally and nationally. Clinic (VFC) is right next door, and treats responses to testing positive for HIV dur- In her spare time, she is an actor, avid HIV, HCV, and STIs, thus providing other ing COVID are much the same as before reader, enthusiastic concert-goer, and

medical care to the beach community. COVID, “there are a range of reactions proud mom of Baxter, her rescue cat. PHOTO BY PAMELA KERR

14 JAN+FEB 2021 | POSITIVELYAWARE.COM/SUBSCRIBE limits outdoor activities, there are ways to exercise and be more active in your home. YouTube is a great source of exercise programs, and a search of “fitness class for seniors” will bring up a variety of free programs of various lengths and fitness styles to try. Silver Sneakers offers a variety of on-demand exercise classes for free with certain Medicare insurance plans. You can see if you are an eligible member at silver- sneakers.com. CJE SeniorLife offers a variety of evidence- based falls prevention group classes on Zoom and over the telephone. A listing of their programs is available at cje.net/falls. Even household objects like laundry detergent, gallons of water, or heavy Surviving and thriving books can serve as weights for resistance exercise. Research shows that during another epidemic those aging with HIV should participate in a combination of aerobic (endurance), resis- The role of diet and exercise in the era of COVID-19 tance (strength-training), and BY MARGARET DANILOVICH PT, DPT, PhD balance exercises.

Aerobic exercise As of the writing of this article, more than 250 days in cardiovascular health that have passed since The World Health Organization limit endurance and cre- Aerobic exercise elevates your ate more fatigue. Together, heart rate and breathing rate declared the novel coronavirus (COVID-19) outbreak people aging with HIV face a to keep your heart, lungs, and a global pandemic. Sadly, with over a quarter of a form of “double jeopardy”— circulatory system healthy. million Americans dead from the virus and rising experiencing the physiologi- Examples of aerobic exercise numbers of cases, cities across the country have rein- cal changes due to HIV as include activities such as well as normal age-related walking, riding a bike, jogging, stated curfews, banned indoor activities, and limited changes. The end result is dance, and swimming. Older group gatherings. that aging with HIV is associ- adults aging with HIV should ated with even greater losses strive to achieve at least 150 While these measures are found that people aging of muscle strength, increased minutes of aerobic exercise undoubtedly important to with HIV only achieved 3,442 risk for falls, and lower endur- each week. For the best slow the virus spread, these steps per day (the goal being ance than peers of the same health benefits, aerobic exer- guidelines also have the 10,000) and attained only age who are aging without cise should be done at a mini- side effect of limiting social 35 minutes of moderate- HIV. Unfortunately, being mum of a moderate-intensity interaction, reducing oppor- vigorous physical activity inactive and not participating level, a level where you could tunities for physical activity each week (the goal being in regular exercise only accel- talk during the activity, but and exercise, and causing 150 minutes). People aging erates these normal age- not sing. In contrast, a vigor- greater isolation, significantly with HIV spent 75% of their related changes, leading to ous-intensity level would be impacting physical and men- day in sedentary (sitting or greater risks for falling, loss where you could talk, but only tal health. lying down) activities. The of independence, cognitive for a few words before need- Within 30 days of the COVID-19 pandemic has decline, and illnesses such as ing to take a breath. If you March 11 pandemic declara- only worsened these rates of cardiovascular disease, diabe- cannot reach 150 minutes tion, worldwide physical inactivity. tes, and cancer. per week right now, do what activity dropped nearly 27%. HIV is associated with you can. Every minute counts Reduced physical activ- muscle wasting, peripheral Exercise recommendations and each additional minute of ity can be detrimental neuropathy and balance dys- activity provides even more particularly for older adults function, and higher rates The good news is that it is health benefits. who even pre-COVID were of fatigue. Independently, never too late to get more not meeting recommended normal aging also results in active and there are solutions Resistance exercise physical activity guidelines. reduced muscle strength, to becoming healthier safely Rates of inactivity are decreased nerve function in the time of COVID. Resistance exercise even worse among those leading to more balance While fitness centers may (strength-training activities

ISTOCKPHOTO aging with HIV. A 2018 study impairments, and reductions be closed and winter weather that build muscle) should

POSITIVELYAWARE.COM/SUBSCRIBE | JAN+FEB 2021 15 be done two-three days per Physical activity recommendations for older adults week at a moderate-high intensity for 10–12 repeti- tions and 1–2 sets for major muscle groups (biceps, chest, quadriceps, and glutes). To build strength, you need to lift a weight that provides a challenge. If you are unsure of where to start, aim for a Aerobic Resistance Balance weight that you can lift at GOAL: 150 minutes per week GOAL: 2-3 days per week; GOAL: Daily practice of least 10 times comfortably. If at least at a moderate 10 repetitions and balance activities (activities you can lift the weight more intensity 1-2 sets per muscle; use that make you feel slightly than 15 repetitions, it is likely a moderate-high intensity unstable) for more than too light and if you can’t lift 15 minutes per day at least 8 times, it is likely too SOURCE: NATIONAL PHYSICAL ACTIVITY PLAN heavy. It is also important to note that when starting resistance exercise, you especially during the COVID- substantial mental health guidelines, that’s okay! Every may feel a little sore in the 19 pandemic. Because of challenges as well. One study minute of activity counts 24–48 hours after exercise. muscle loss that occurs on young people living with towards reaching these This soreness is a normal with HIV, protein intake, HIV in Asia and the Pacific levels and you should aim to response to activity, but in particular, is especially found that 70% felt anxious increase your activity by 5% sharp pain should not be. important to maintain or very anxious about COVID. each week. strength, energy, and Mental health needs Second, find physical Balance exercises immune function. In general, should be addressed with a activities that you enjoy! older adults and those aging healthcare provider so that Especially with free content Finally, balance exercises are with HIV need 1.0–1.2 grams you can access necessary available on the internet, try a activities that make a person of protein per kilogram of resources and appropri- variety of different classes or feel a little unsteady and off- body weight each day (1 ate care from a counselor, exercise programs—Zumba, balance—activities such as kilogram is about 2.2 pounds). psychologist, or psychiatrist. yoga, Pilates, dance, walking, standing with feet in differ- While meat is typically the There is some evidence that and weightlifting, to name ent positions, standing on an first protein source that participation in physical a few. If you don’t enjoy a unsteady surface, or adding comes to mind, protein is also activities can improve mood. particular activity, try another in movements like turning found in fish, chicken, dairy, Research shows that regular class or a different instruc- your head and closing your beans, nuts, and tofu, making physical activity reduces tor and find something eyes. Addressing balance is it possible for vegetarians anxiety, lessens symptoms that brings you enjoyment! important to prevent falls, and vegans to also have of depression, and builds Research shows that greater which can lead to significant adequate protein intake. confidence in one’s physical enjoyment with activity pre- injuries affecting mobility, function—simply put, physi- dicts future physical activity and even death. Community cal activity tends to make participation, so if you want Balance exercises should you feel more confident and to create an exercise habit, be done daily. Research In the AIDS epidemic of the better about yourself! find activities you enjoy and shows it will take about 50 1980s, gay men (in particular) keep them ongoing! hours of practice to see a sig- faced serious shame and Getting started At the end of the day, the nificant improvement in bal- stigma which helped unify best exercise or physical ance so it will take time and the community in the face of So, how can you get started? activity program is one you effort to improve this area. crisis. In our current COVID First, review the guide- actually do consistently. And Because many people aging epidemic, social distancing lines for exercise and physi- for optimal health benefits with HIV face co-existing and isolation necessary to cal activity participation (see when aging with HIV, strive to conditions such as peripheral prevent disease spread make above) and see how your achieve the physical activity neuropathy which affects it harder to unify, and the current activity levels match guidelines through creative balance, seeing a physical impact on mental health has to the guidelines. If you are and safe solutions during the therapist can be a great place been severe. People over the not currently meeting these COVID-19 pandemic. to get a tailored balance age of 65 have been particu- assessment and exercise larly hard hit given that they program. Every state in the are at a higher risk for con- MARGARET DANILOVICH is the senior U.S. allows for evaluation tracting COVID and account director of the Leonard Schanfield and some form of treatment for 80% of all COVID-related Research Institute at CJE SeniorLife without a physician referral deaths. and an adjunct assistant professor at so you can access a physical According to a Kaiser , where she therapist directly for this care. Family Foundation report, directs the dual degree Master of Public To find a physical therapist, nearly 25% of people over Health and Doctor of Physical Therapy go to apta.org/findaPT. the age of 65 report anxiety program. A physical therapist by back- or depression due to COVID. ground, she has practiced her entire Nutrition While there has not been career with older adults. Her current research yet on the popula- research has been funded by the NIH, Retirement Research It is also important to tion aging with HIV, it is high- Foundation, and Third Coast Center for AIDS Research and

maintain good nutrition, ly likely that they are facing focuses on exercise interventions for older adults with frailty. BARB LEVANTDANILOVICH: PHOTOGRAPHY

16 JAN+FEB 2021 | POSITIVELYAWARE.COM/SUBSCRIBE Exercising self-care Relaxation and writing exercises toward healing COMPILED BY ENID VÁZQUEZ

As the world attempts to bring the coronavirus pandemic under control, you hold while entering a space. As a it’s also struggling to deal with the emotional effects of sheltering in place. writer I know that if I’m not really feel- How do isolation and the minimizing of social interaction affect us? This is ing it, my writing is crappy. But when I ground myself and when I think about where the “softer” side of HIV care can help. While the HIV epidemic needs who I am and whose I am and what I’m medical development to control the virus, there’s also a need for personal trying to accomplish, something beauti- and social care for everyone in the struggle, living with HIV or not. “Fearlessly ful happens. So I want to invite you into Forward: Journaling to Fuel Mind, Body, and Spirit” was a panel discussion that space. and workshop during the 2020 virtual U.S. Conference on HIV/AIDS (USCHA), “Think for a moment. What do you need to show up in this moment fully? held in October. Poet and educator Natalie Patterson led a panel—and an What do you need? Maybe that’s to give entire webinar audience—through a series of relaxation exercises to get at the yourself permission to be here. Maybe heart of anxieties, all in the name of healing. —ENID VÁZQUEZ that’s to ignore the dog that’s barking behind you. (Laughing) Maybe that’s to try something new, to be playful. I want You can write “It is reconstructed again. I love that you to write that at the top of the page.” “There is so much power in writing, and because in many ways it mimics heal- being able to articulate your emotions ing. It mimics the process of healing. The Feelings Wheel and really advocating for yourself,” said I wanted to offer you this metaphor “I want to offer you this Feelings Wheel Natalie Patterson. “Self-care looks differ- because the work that we’re going to do [see next page], created by Dr. Gloria ent for every single person. And because really mimics this art and this practice of Willcox, a psychotherapist. The first time I’m a poet and because I’m a writer, I’ve kintsugi.” I saw this, my entire mind was blown. designed a writing workshop. So, I hope The Feelings Wheel encourages you to all of you at home will join me and the Take a breath know your feelings. In the center are the Fearless Five [panelists] on a little writ- “A little bit of warm up. We’re going typical feelings that we generally have: ing adventure. This is really a tool. It’s to breathe a little bit. We’re going to happy, sad, angry, scared, powerful, and one that I use for healing, for processing, breathe on purpose,” she said. “I know peaceful, the stuff we more typically and for activating my best life ever.” it’s a novel idea. And then we’re going to experience. As we get further and fur- write some stuff. Maybe we’ll feel some ther out on that circle, it’s more nuanced. Release judgment new feelings by the end.” It’s more articulate. It’s the things we “You are divine and perfect and abso- don’t really talk about but might get at lutely amazing,” she said. “So you can’t Make a list the root of the feelings we’re expressing do this wrong. I want you to just let go “I want to introduce you to intention to the world, the look on our face. Think of any fear that might be rattling around building. Many of us do this practice about this, and think about what are in you. ‘I haven’t done that since third anyway. Thinking about what intention you really carrying right now? What are grade!’ Just let that go. Go ahead and let it go. You’re amazing. You have writ- ten things down before. You won’t get judged if you spell things wrong. That’s okay too. No one’s judging you. There is no judgment and this is really an opportunity.”

Kintsugi “I want to start with this idea: It is this word kintsugi. Kintsugi means ‘join with gold.’ That’s the literal translation,” Patterson said. “It’s a 15th century Japanese practice that invites us to consider the philosophy behind kintsugi, which treats breakage and repair as part of the history of an object rather than something to disguise. And I love that. The process of repairing, instead of throwing something away. It’s literally a bowl that is filled with gold. It’s broken and then repaired. Over a month or up to two years this could be a process of KINTSUGI IS THE JAPANESE ART OF PUTTING BROKEN POTTERY PIECES bringing it back together. Filing it away BACK TOGETHER WITH GOLD, BASED UPON THE IDEA THAT EMBRACING FLAWS AND

MARCO MONTALTI/ISTOCKPHOTO by hand, so that all the grooves match. IMPERFECTIONS CAN CREATE AN EVEN STRONGER, MORE BEAUTIFUL PIECE OF ART.

POSITIVELYAWARE.COM/SUBSCRIBE | JAN+FEB 2021 17 THE FEELINGS WHEEL GIVE IT A SPIN! Explore your emotions. Coloring the wheel is an opportunity to get to know your feelings and contemplate each word. SOURCE: blog.calm.com/blog/the-feelings-wheel CRAYONS: ISTOCKPHOTO CRAYONS:

18 JAN+FEB 2021 | POSITIVELYAWARE.COM/SUBSCRIBE the feelings you’re feeling right in this ‘Resolved! Resolved, resolved, resolved! be?’ Really, that’s the invitation to think moment? I invite you to take a breath, You get freedom!’ None of these words about. To solve these larger problems, an intentional breath. We breathe all day, exist anymore. The magic. How would we have to be larger people. We have but rarely on purpose. So take a breath. you feel if all the things on your list were to be people of integrity. We have to be Find your center. And give yourself per- finished and complete? What if all of noble. We have to be wise. Because if mission to investigate how you’re feeling these things were gone? Really, really we’re not, we’re being circumstantial, right now. Just write a couple of words in your spirit—what would you feel like? situational. You see the evidence of that at the top of your page. How are you The moment all of these things were in the world. You look at everything and feeling right now? Name those feelings. complete and finished? What would think, ‘Oh, this is a one-off. And this is be the feelings rattling around in your a one-off. And this is a one-off.’ Instead Take two spirit? What would the look on your face of looking at the whole breadth of the “I want you to jump in now to make some look like if you had this kind of libera- experience. lists. You only have two minutes, so don’t tion? It’s all done. What would it feel like “I think about being a Black woman. overthink it. You don’t even have time to to stand in the sun of your liberation? Being a Black queer woman. Being a overthink it. I want you to make a list of “So, I invite you to write for a moment Black queer artist. All these intersec- the biggest things that are unfinished in or two just what that would feel like. tions—they’re not separate from me. your life. All the things, big or small, just Can you even imagine that for yourself? They’re all the same lived experience. name them. We don’t have to process What would it feel like for all of these There’s my whole entire life. I’m not like, them right now, but we can name them. things to be resolved, for you to be ‘Well, I’m going to be a Black woman That email you know you were supposed standing in your freedom and liberation? today. And I’m going to be queer tomor- to respond to six weeks ago. row.’ No, no, no. That’s not how it works. “Now, as you finish up, take a breath New day, new world I walk out and I’m all of those things at and think about how this feels, to look at “As you’re sitting with and imagining this the same time. It’s an opportunity to this page filled with all these things that liberation and this freedom and all of think about how we can be whole in the are unfinished, with all the things you’re these things resolved and completed, I world—and be happy, and be with joy. worried about. Hold that paper up—and want to know if you have been planning It’s not, ‘Well, when this happens’ or ‘if separate it from yourself. I want you to for your joy. Have we really been spend- this happens.’ No, no, no. remind yourself that these words no lon- ing as much time with our joy and our “We sit in both places at once. I think ger exist inside your body. That’s a gift, future planning and our future world that’s the complexity of being human. to have a vantage point, to be able to see building? Have we been sitting with that We’re not superheroes. We’re human. it clearly and from somewhere else. You as much as we sit with our worry? We’re not weak. We’re strong. no longer have to house these things “Because I think we need to, in these “That freedom is a process. Healing inside of your own body. You can check grim and dark times. We’ve got to be is a process. And wherever you find back with them. You can look back at planning for a better day. yourself today, just take another step them and think, ‘Oh, these are my wor- “We might be planning for the joy forward. And another step forward. And ries.’ But you don’t have to hold them in tomorrow, like the joy of our paycheck, another step forward. We get preoccu- your spirit. There’s liberation in that. but are we really imagining liberation for pied with the outcome sometimes. We’re ourselves and for other people? Because like, ‘Well, I’m not liberated today!’ Well, Take two more that’s what we have to do to begin to that’s not how things happen in real life. “I want you to now envision deeply. If I heal ourselves, but also heal this world It’s not Instagram, honey. Your healing had a magic wand and I was your fairy and these toxic thoughts. ain’t going to be an upload. We’re going godmother and I came through like, “I love this exercise because it really to have to do it every single day. Which is gives us this opportunity to see where why I offer you this practice that you can our cup is being filled. To see where continually come back to and return to we’re not paying attention to yourself. Find your joy. Whether it’s from ourselves. To see where age 19, or 7 or 4. Come back to that and we’re giving too much. I re-commit to it. love this because it’s an “I encourage you to practice this over opportunity. Anytime and over. Wherever you are in the pro- we get to sit with cess is beautiful and information for your- our feelings and self of how to stay tuned up, and really anytime we get that’s the point. It’s a self-care practice, to sit with our meaning every time we do it, we’re not truth is an going to be good at it. But sometimes opportunity we’re going to strike gold, and it’s going for us to get to be really, really beautiful.” to know our- selves better. POSITIVELY FEARLESS is sponsored by And that’s a Janssen Therapeutics. WATCH videos of gift. Even in Positively Fearless panelists telling their the midst of stories at positivelyfearless.com. There tears. That’s are several versions of the Feelings purification. Wheel available for download online. AT That’s releasing blog.calm.com/blog/the-feelings-wheel, the toxicity. So, there’s a black-and-white version for col- that’s blessed. oring, which is not only relaxing, but helps There’s joy in that. people familiarize themselves better with “So many of us feel, the feelings on the wheel. For more from ‘If I wasn’t worried about the presenter, GO TO NatalieIsPoetry.com. something, who would I

POSITIVELYAWARE.COM/SUBSCRIBE | JAN+FEB 2021 19 A DOG’S POWER TO HEAL A new photo book illustrates how a dog’s unconditional love can transform the lives of people living with HIV BY RICK GUASCO

20 JAN+FEB 2021 | POSITIVELYAWARE.COM/SUBSCRIBE his is a story about the healing power of uncon- ditional love. More like 36 stories—that’s how many are shared in a new Tbook, When Dogs Heal, about the bond between people living with HIV and their dogs, and how it changed their lives. Through a dog’s love, people found acceptance, and overcame stigma, shame, and other issues.

In 2010, Rob Garofalo, MD, MPH, was struggling in the aftermath of an assault and a series of traumatic events that led to his HIV diagnosis. As director of adolescent HIV services at the Ann & Robert H. Lurie Children’s Hospital in Chicago (where he is now division head of adolescent medicine), he has always been passionate about the care of LGBTQ youth. “Although I had spent my life caring for GAROFALO WITH people affected by HIV, I found it hard to offer HIS YORKIE, FRED myself the same love and compassion that I had spent my life teaching others to have for themselves,” he says. “I didn't think things like peace and joy were ever going to be pos- sible in my life again. “Many of us living with HIV have had those moments. In that moment, I had this not really rational, impetuous thought. I sat on my bed, debating taking my own life, and at the next moment I was like, maybe I should get a dog! I remember calling a friend who thought that was the craziest idea ever, prob- ably because it was.”

Finding Fred

GAROFALO DID a Google search for puppies and Chicago, and a picture of a Yorkshire ter- rier pup appeared. He contacted the breeder, who was in the area, and within a couple days, Garofalo brought home the pup, whom he named Fred. “Honestly, it was a selfish decision,” he admits. “I couldn't even care for myself, what made me think I could care for a dog? But the one thing about having a dog—he didn't have any patience for my self-pity. He didn’t have any room for my self-isolation. He wasn’t going to put up with my not being present. “What my dog has been is my anchor—an anchor to goodness, an anchor to uncondi- tional love, an anchor to this pure little soul that needed me. People living with HIV can understand this. I needed to be needed, and Fred as a puppy was that for me. He needed me to feed him and walk him and care for him. In doing that, he literally brought me back to life.” A DOG’S POWER TO HEAL Garofalo rebuilt his life around his dog, creating a nonprofit organization called Fred Says, raising money for various HIV service organizations throughout the U.S., including TPAN, publisher of POSITIVELY AWARE. During

PHOTO: JOHN GRESS JOHN PHOTO: a trip to Los Angeles, he was having coffee

POSITIVELYAWARE.COM/SUBSCRIBE | JAN+FEB 2021 21 Adam and Laila “Laila showed me what unconditional love truly is. When humans were casting me out by saying hurtful things behind my back, Laila showed up for me—she was consistently loyal—and she still shows up for me. Every single day, she meets me with love.”

with friends, writer/editor Zach Stafford Christina, who is also the voice was trying to find a unicorn—you had to and dog photographer Jesse Freidin, to of Fred Says on social media, was be HIV positive, be open and talk about discuss ideas for Fred Says. That’s when brought in to finish the interviews being HIV positive in a public space, he blurted out, when dogs heal. Uncertain when Stafford’s schedule became too have a dog, and have a compelling story at first what form the idea would take, it busy. “It's not unusual for me to talk to to tell about your dog. When you read became a photo book, telling the stories a stranger and learn a lot about them. I the book, the people in it are really brave of people in their own words, of the let them tell their story. I've had my own and beautiful. transformative experience of a dog’s love mental health struggles with anxiety and “I think about Paulo and his dog Stud, following their HIV diagnosis. shame. Having grown up with dogs, I and all the trauma he went through as “We talked about how powerful it understand feeling alone but how a dog a Hurricane Katrina evacuee, how he was, how [Rob’s] dog helped him move can make a difference.” acquired HIV after being evacuated from through to acceptance of his own Work on the book unfolded over the New Orleans to Chicago, is such a heart- diagnosis,” recalls Freidin. “From there, years as Garofalo and Stafford traveled breaking story. In each story, you hear we wondered if there were other people to Chicago, Los Angeles, San Francisco, about how devastating the diagnosis who are dealing with HIV who have and Atlanta. They contacted local AIDS of this disease was, but in the end, the stories like this. We got so excited at the service organizations and used dating central theme is about life and living prospect of telling a new story about HIV.” and social media apps to find dog owners and love. There's a story about Brad and living with HIV who might be interested Thor in San Francisco. Brad was using Dog tales in being interviewed. drugs, and in a police raid, his room- “Recruitment wasn't easy, but it’s mate’s dog, Thor, was stabbed. In that WHAT FOLLOWED was a nearly six-year- definitely part of the story of the book,” moment, in order to take care of the dog, long project, finding people living with Garofalo says. “Each city was really Brad decided to get clean and never use HIV who would share their stories, and different. In San Francisco we met a lot drugs again. There's a story about R.J. interviewing and photographing them of somewhat older men who were long- and Stoli, in Atlanta. R.J. was marginally for the book. Stafford and Garofalo’s term survivors of HIV, some who had housed and really wanted to participate niece, Christina, a Los Angeles-based been diagnosed in the ’80s. Their stories in the photo shoot. He needed a lot of TV writer and journalist, worked on the were very different from some of the support; I called an Uber to get him interviews and stories. Each of them younger people we met, say, in Atlanta. and his dog to the photo shoot. The brought something personal to the book. Even the stigma was different. The peo- story about what his dog helped him to “I like to work on projects that center ple we met in San Francisco were much overcome in terms of R.J.’s physical dis- around joy and celebration of queer more apt to be open about their diagno- abilities is powerful. people and what we've been through,” sis, whereas in Atlanta, we had a lot of “When you read the book, you see that says Stafford. “What was fascinating was people who initially expressed interest, for each person, the journey was different. that so many people told similar stories but when they found out that they had For each person, their dog—or dogs— in different contexts—they felt no one to be open or disclose their HIV status as served a different role. But at the core of would love them, that they did not feel part of such a public project as a book, those stories is coming back from some deserving of love. The dogs changed a number of people backed out. It was form of devastation. Their HIV diagnosis that for them. They learned how to love a balancing act. The introduction of the had brought them to their knees, whatev-

themselves.” book, which I wrote, tells this well. It er that meant in their lives. Each of them PHOTOS FROM ‘WHEN DOGS BY HEAL’ JESSE FREIDIN

22 JAN+FEB 2021 | POSITIVELYAWARE.COM/SUBSCRIBE found the strength and the power to go not naïve enough to say it's like having recognized how mutually beneficial the on in part because of the unconditional a child. It's not the same. But they do relationship was. love their dogs provided them.” require from us a lot of love and nurtur- “What I've learned through this book, ing and caring. If for whatever reason, and in part what I've learned from my The care of a dog someone is incapable of making that dog Fred, is that authenticity and hon- type of commitment, either emotionally, esty about who I am in my journey is in HOWEVER, having a dog is not for every- financially, or with their time, then hav- some ways my superpower. If I’m not one. “Getting a dog is not a panacea that ing a dog might not be the right answer. honest in both my personal and profes- resolves the stigma surrounding HIV,” “There’ve been news stories about an sional spaces, then HIV retains some Garofalo admits. “Getting a dog wasn’t increase in dog or pet adoptions dur- power over me that I refuse to give it. I'm enough. I grappled, and continue to ing the pandemic, I think particularly fully honest about my HIV status, about grapple over the years, with depression, for people who are living alone. I'm my history of addiction and recovery, anxiety, addiction, and recovery. I've had someone who has clung to his sobriety about all the things I need to be in order challenges over the years, and I've had as a lifeline over the years. I don't know to live my best life.” to surround myself with good things if during the isolation of the pandemic, and people. [how I would manage] without my dog SELECTED PERSONAL ACCOUNTS from “Everyone has to do a bit of self- being the one thing to consistently keep When Dogs Heal can be found at exploration and self-examination. The me company through stay-at-home whendogsheal.org/portraitsandstories. truth is, I am a man who has a great deal orders and self-quarantines. I have such Scheduled for release on March 3, the of privilege, and so I've been able to have profound gratitude for my dog the past book can be pre-ordered on Amazon.com. a pet sitter, and afford many aspects of year that transcends even the gratitude having a dog that far too many people I have for him around my HIV diagnosis. TO HELP identify people living with HIV living with HIV might not be able to. The There's an element around COVID and in Chicago who might benefit from the decision to have a dog in your life is not this pandemic for many of us who have companionship of a dog, Garofalo, who one that should be taken lightly. I accept pets, especially dogs in this case, that serves on TPAN’s board, worked with the that my decision was impetuous and I live in a newfound state of gratitude organization to create a program called selfish—I don’t advise that strategy. around the magical qualities they bring Paws ‘n’ Effect. Applicants are thorough- “They have to ask themselves if they to our lives.” ly screened before being paired with a feel that they have the time, the capacity, On many levels, says Garofalo, some rescue dog from a local animal shelter. and willingness to take care of another of the people featured in the book had For more information about the program, living creature. What will the addition of to be convinced that getting a dog might GO TO tpan.com/paws-n-effect. an animal or a dog mean for them and be helpful to them. For each of them, he their lives? It’s truly a commitment. I’m says, there came a moment when they

Sharon and Dulk “One day, my sister went to an animal shelter and adopted Dulk. From the moment she brought him home to me, he never missed a beat. Dulk became the thing I’d needed most since my diagnosis: a companion.”

POSITIVELYAWARE.COM/SUBSCRIBE | JAN+FEB 2021 23 U=U, and V=V A look at the vulnerabilities behind detectable virus COMPILED BY ENID VÁZQUEZ

The world is still catching up to the facts of U=U: people on effective treatment with undetectable HIV viral load are untransmittable—they cannot pass the virus on to their sex partners. But what about individuals who are unable to achieve—or maintain—undetectable viral load? Black advocates stress the need to also understand V=V: viremia equals vulnerability. Here, viremia refers not just to virus, but specifically to detectable viral load. At the virtual U.S. Conference on HIV/AIDS (USCHA) 2020, held in October, longtime HIV prevention specialist and consultant Leisha McKinley-Beach, of Atlanta, discussed these issues with Larry Scott-Walker, co-founder and executive director of Atlanta-based HIV support organization THRIVE SS.

LEISHA MCKINLEY-BEACH: and their support net- We know that the work truly what undetect- science behind U=U able means. But it is also is undisputable. We’re ensuring that there are talking about people with systems in place to help HIV who have achieved— that person sustain their and maintained—an undetectable status. undetectable viral load It’s also understand- by taking their meds ing that with the best every day cannot sexually efforts, not everyone transmit the virus to achieves that status. others. So that’s a huge So are we indirectly milestone within our HIV adding to the stigma, movement when we talk specifically within Black about the tools and the communities, when skills that we now have we have individuals to see ending the HIV who may not be able to epidemic. achieve or maintain viral When we look at this suppression? It’s not term “undetectable,” just about the medical what does that really aspect. There are social mean? Is it that today I and economic and envi- went in and I got my viral ronmental reasons why load done and it’s unde- one may not be able to tectable, and that’s it? achieve or maintain their So from here on out I’m viral suppression. ‘There are social and economic and environmental undetectable? We know And finally, when we reasons why one may not be able to achieve or that is not the case. The talk about any of our maintain their viral suppression.’ U=U campaign is very initiatives, particularly succinct. We have to be those that have centered LEISHA McKINLEY-BEACH able to explain to people people living with HIV,

who are living with HIV let’s not always talk REEVES PHOTOGRAPHY TONYA MCKINLEY-BEACH:

26 JAN+FEB 2021 | POSITIVELYAWARE.COM/SUBSCRIBE V=V is a way of understanding the why, the who, and the how we best support people who are living with HIV who may be out of care or may not be on their ARVs and similar situations.

about it from a place of is in a vulnerable state. risk, but let’s talk about it Some people may never from a place of improved reach undetectable sta- health. Let’s talk about tus. And they could take what that means for their medication every Black love. For self love. day. As long as we are And be able to support working with our doctors those individuals that and our care team to even with their best stay healthy and to stay effort may not be able to in the driver’s seat of our achieve viral suppression, health, then we’re doing and that that is okay. And what needs to be done. that there’s no shame or V=V is speaking to those judgment. Let’s continue people who for what- to focus on how we cen- ever reasons—stigma, ter them to help them change in life status, or get to the best quality anything like that—that care and health that’s they’re actually disen- possible. franchised or unable to take care of their HIV LARRY SCOTT-WALKER: status. [Some] are at a Campaigns can actually place where they elected do harm when we don’t to stop taking their HIV express them fully. The meds. PARTNERS [serodiscor- Look, detectability dant couples] Study [is happens. Even when important] because the we’re taking our meds. campaign is nothing There should be no without the science shame or shaming behind it. around a person living With V=V [viremia with HIV’s viral load. We equals vulnerability], as people living with notice that we didn’t say HIV, especially as Black “viremia equals vulner- people living with HIV able,” because we’re or highly marginalized not our HIV status. I’m people living with HIV, not vulnerable. We’re have so many stigmas resilient. We’re powerful. working against us. Our We’re magic. But the vul- ability to maintain or nerabilities that present reduce a level of virus in for people living with HIV our system should not are with unchecked viral negate or keep us from load. It leaves us open as being loved or valued by people living with HIV to our community. a host of opportunistic V=V is a way of infections, illnesses, understanding the why, complications, social the who, and the how stigmas that should not we best support people exist, and also leaves us who are living with HIV vulnerable to early death. who may be out of care We all want to live long, or may not be on their thriving lives. ARVs [antiretrovirals] and We have to be similar situations. ‘We’re resilient. grounded in the under- People who are left We’re powerful. standing that not every vulnerable because We’re magic.’ person who is living with they may be living with LARRY SCOTT-WALKER HIV, who is detectable or unchecked HIV viral load

SCOTT-WALKER: KEVIN KENNER SCOTT-WALKER: has a detectable status, are sometimes people

POSITIVELYAWARE.COM/SUBSCRIBE | JAN+FEB 2021 27 ‘If there is truly a commitment to ending this epidemic, then there is a commitment to helping folks achieve viral suppression under whatever campaign umbrella.’ —LEISHA McKINLEY-BEACH

who don’t have their hier- and that I have to take main reasons that people that support can save archy of needs met. If you this pill for the rest of note for leaving care was lives. That lack of support don’t have a place to stay, my life. And for some of due to some bad experi- is a social determinant of if you don’t have food to us, just saying, Oh, you ence with a provider. My health. take with your medica- can live a long, healthy doctor doesn’t listen to Now, we say “social tion, if you don’t feel life doesn’t remove the me. The girl at the front determinants of health” safe—you are not going stigma. Doesn’t remove desk yelled my name and a lot in public health. I to prioritize that pill. the hurt and the pit in our I felt like everybody saw wanted to break down Some young Black stomach that we feel as me. That caused me to the social determinants gay men and some other people living with HIV. lose the will to even want of health here. [See box.] demographics of young Some people who to engage medical care A lack of income, educa- people may feel invinci- use drugs are incapable anymore. Or maybe some- tional opportunities, safe- of sustaining viral sup- thing changed. I lost my ty in your area, you know, pression. They take their job. I lost my house. I lost even seeing your area not Social determinants of health meds every day; they go my insurance. … Or your being a beautiful area. to the doctor. They may job switches your insur- I’m from East Baltimore n Income level just not achieve less than ance, so now where you and growing up I saw bro- n Educational opportunities 50 copies of HIV. go they don’t accept the ken bottles and people n Occupation, employment status, Some long-term insurance. That disrup- who were on drugs and and workplace safety survivors aging with HIV tion may actually cause a things like that, and that n Gender inequity have been taking differ- person to leave care. stuff actually seeps into n Racial segregation ent medications over the Social stigmas—the your mind. It affects not n Food insecurity and years for various reasons stigmas that are put on only your health physical- inaccessibility of nutritious food and may not be able to us every day, and not just ly, but your mental health. choices achieve viral suppression, HIV-related stigma. But These are all things that n Access to housing and utility especially in this time of racism, sexism, trans- impact a person living services COVID. We have the larg- phobia. These stigmas with HIV’s desire to n Early childhood experiences and est network of Black gay impact how we see engage in medical care. development men living with HIV in ourselves, how we move We are more than n Social support and community the country. A large por- through the world, how just our status. Our main inclusivity tion of them are people we address our HIV. goal is not viral suppres- n Crime rates and exposure to aging with HIV, over the There’s stigma sion. Yes, we want to be violent behavior age of 50, who’ve been attached to care facilities. healthy. Yes, we want n Availability of transportation living with HIV for over I will never forget when to live happy, long lives. n Neighborhood conditions and a decade. They’re chal- I first moved back to But … we’re more than physical environment lenged in general with Atlanta. I was working at HIV. And when we as n Access to safe drinking water, isolation, with feelings an ASO and I was on the practitioners and people clean air, and toxin-free of depression, because bus. We passed one of who work in community environments they’re aging. Their the largest care facilities negate that, when we n Recreational and leisure social status may have for people living with HIV, make viral suppression opportunities changed in the com- and the bus driver said, the main goal for a per- munity because it seems “Oh, that’s the AIDS clinic.” son, we actually become that some communities I was aghast. And hearing a barrier. ble. I’m healthy. I’m young. are obsessed with youth. this on the bus I imme- We operationalize V=V I don’t feel sick and I don’t And being in this place of diately thought, what if by first understanding want to take this pill. COVID and told to physi- I were a young person that we are people. That Some Black women … cally distance is bringing who felt a high level of we are not disease states. I’m actually in Baltimore, some things up for many stigma and I was going to I am not HIV. I am virally Maryland right now long-term survivors. I’ve my first appointment? I undetectable, but I’m not because my sister was heard many say that might have stayed on that undetectable. I’m very a person living with they’re challenged to bus and went back home detectable. I’m here. You HIV. She succumbed to take their medications. because I wouldn’t want know I have worth and HIV because she dealt Some of the reasons to be seen as a person agency. Inquire about our with a lifetime of stigma. why people elected to going into the AIDS clinic. whole lives to identify Because she was a leave care or may not Lack of support—sup- barriers—vulnerabilities— woman, she was living adhere to their medical port saves lives. Actually, that may challenge our with HIV, she feared the regimen that stuck out through an effort of ability to take care of our- judgments for both her- for me were … bad pro- THRIVE, the CDC updated selves. But also inquire self and her sons. vider experiences. I can- their recommendations about our lives to identify For some of us liv- not tell you how much we for HIV testing to include those things that you use ing with HIV, taking hear this at THRIVE. We support for people living to empower us around that pill every night is link [many] people back with HIV, directly linking mental health and utilize a reminder that I’m a to care or to care for the them immediately to our goals. My goals were person living with HIV first time and one of the support, understanding how my parents and my

28 JAN+FEB 2021 | POSITIVELYAWARE.COM/SUBSCRIBE ‘If there is truly a commitment to ending this epidemic, then there is a commitment to helping folks achieve viral suppression under whatever campaign umbrella.’ —LEISHA McKINLEY-BEACH

brother helped to push happy healthy life.” No, impact your living with showing up and remind- me through my educa- deal with the thing that’s HIV. So I’m going to do ing us that it’s not just tion and keep me focused going on with my life everything in my power the HIV, it’s all the other because they would hold and when you address to get you to wherever issues that got us here, my goals up. We should and honor that real thing you need to get to so that to have a conversation do that same thing for that’s happening, you you can deal with the loss about HIV that has to be people who have HIV. inspire me. You don’t that you’ve experienced, addressed. If there is truly Remember that there have to drag me to this the grief around losing a a commitment to ending is no pill to rebuild will. place of undetectability person you love, and so this epidemic, then there And if our minds and because I’ll feel that you that you can continue to is a commitment to help- hearts aren’t well, or our care and I’ll be open to prioritize your HIV care ing folks achieve viral sup- ability to take care of your messages. and treatment. pression under whatever ourselves is challenged, Also understand that campaign umbrella. U=U, then we’re not going to in order to sustain U=U LEISHA McKINLEY- V=V, combining them prioritize HIV. we have to train our- BEACH: Phill [Wilson, of together—if the com- You know, it’s mad- selves to be aware and the Black AIDS Institute] mitment is real, then we dening to think that a to be looking for rising would say that we were have to address all of the person can say I’ve been vulnerabilities, especially greater than the middle vulnerabilities that got us really depressed because those that don’t directly passage, we were greater here in the first place. of something that’s going relate to HIV. You and than Jim Crow. And I’m on in their life and that’s your boyfriend just broke adding now, we are great- The presentation has been the reason why they up? How’s that making er than police brutality. edited for space. READ the decided to not take their you feel? Understanding We’re greater than COVID, complete transcript online, pills, and for a practitio- that losing your partner and we’re going to be including a look at U=U ner to say, “Take your pills is not an effect of HIV, greater than HIV. With campaigns. because you can live a but it’s a thing that could leaders like you, who keep

“My experience was not the first with HIV discrimination. I am speaking out because I would like it to be my last.” — client Nikko Briteramos, after being refused a haircut because of his HIV status

Know your rights Support the fight lambdalegal.org/hiv

POSITIVELYAWARE.COM/SUBSCRIBE | JAN+FEB 2021 29 How women of color living with HIV helped win the election Building on the power of the HIV community, Vote Positive USA is ready for more BY JD DAVIDS

On the night of November 3, 2020, the polls were just starting to close and a weary nation awaited the results of a deeply contentious election in the midst of an escalating pandemic. But the leaders of Vote Positive USA (VPU)— primarily Black and Brown cisgender and transgender women living with HIV—gathered online with a sense of well-earned victory, knowing that no matter what the outcome, their year- long efforts to build and focus the power of communities most affected by HIV had been a massive success.

“It’s been a wonderful day,” said LaTonya Roby in Atlanta, speaking on a Facebook Live video featuring VPU organizers from Colorado, Georgia, Pennsylvania, and Texas [bit.ly/Vote-Poz- Debrief]. “I’m super excited. We’ve actu- ally been phone banking thousands and thousands of people for weeks, we’ve been just trying to get out the vote, and we’re pretty excited about what we were able to accomplish. Today we spent 12 hours at the polls, from seven to seven. “The thing that I’m most excited about is that we had so many new people who volunteered, who had never worked the polls before… So, they had a chance to get their feet wet. And these are our future leaders, so I was excited about their excitement, and just the prospects of what we can accomplish in Georgia, and the groundwork that’s been done… We had a great time,” said Roby. The excitement felt by VPU organiz- ers was further bolstered by the mas- sive numbers of people whose lives they touched over a year of organizing. According to a statement released by VPU right after the video session, their team had canvassed nearly half a million voters through phone banking, texting, and other efforts. They helped people to register to vote and make plans for mail-in or early voting, ensured that folks could get to the polls, and even partici- pated in poll site monitoring in some of POSITIVE CAMPAIGN: TANA PRADIA (RIGHT) STANDS NEXT TO REP. SHELIA JACKSON-LEE, the states most anticipated to determine WHO WAS ENDORSED BY VOTE POSITIVE USA AND WON RE-ELECTION. the results of the presidential election.

30 JAN+FEB 2021 | POSITIVELYAWARE.COM/SUBSCRIBE ‘We’ve been hitting the ground running since the beginning of [2020], before coronavirus even came into our lives.’

ABOVE: KENYA MOUSSA, A VPU LEADER IN PHILADELPHIA LIVING WITH HIV, ASSEMBLES VOTER PACKETS FOR FROM LEFT: CRYSTAL TOWNSEND, CHRISTINA SANDERS, AND SHADAWN McCANTS SOCIALLY DISTANCED LIT DROPS

“We’ve been hitting the ground forward. The incoming federal admin- lives every day. And we understand that running since the beginning of [2020], istration has vowed to tackle the mas- elections are not the be-all and end-all— before coronavirus even came into sive COVID-19 pandemic and to renew we organize every day, all year round, our lives,” said Teresa Sullivan, a efforts to sustain and extend access to 365 days a year… but we also understand Philadelphia-based VPU organizer. “We health care that is vital to ending the HIV that elections and electoral politics are were door knocking and registering peo- epidemic. And—unlike the Trump admin- one lever of power to build long-term ple to vote, giving people the information istration’s predominantly white and cis- community power for our people, our they needed. People’s anxieties were gender male Cabinet—the Biden/Harris Black and Brown folks, low-income folks, high even before coronavirus, because team says they will staff their agencies LGBTQ folks, people who are at the they were still feeling the impact of what with a diverse team that “looks like intersection of many different forms of happened in 2016.” America,” including members of commu- marginalization and oppression. Even when the COVID-19 pandemic nities most affected by HIV that look like “Our people are powerful, and they struck, Sullivan detailed the persistence the ranks of VPU—LGBTQ people, people have demonstrated their power and they of the VPU team, explaining that “we of color, and people with disabilities. showed their power, all throughout this switched gears real quickly, we did what The terrain ahead will not be easy, but election cycle and we are so proud of we needed to do. Wasn’t messing around. VPU is ready to continue to stay focused them,” she concluded. We have a strategy that’s in place here on building the power of the HIV com- on hand here in Pennsylvania because munity. Naina Khanna, Director of Vote AFTER THE ELECTION we are a battle state in this election.” Positive USA, delivered a rousing call to In the lead-up to the January 5 run-off Like other VPU organizers across the sustain their efforts: election in Georgia for the state’s two U.S. country, the Philadelphians’ effort inten- “We do this work because we under- Senate seats, VPU partnered with Women sified on Election Day. “We even had stand that as people living with HIV, our Engaged, an Atlanta-based nonprofit people on the ground, poll watching in destiny, our fate, our human rights, and organization led by Black women, to the primary and tonight as well. We were the dignity of our people… all of that is do voter engagement. Volunteers were answering questions in real time, things directly impacted by political leaders recruited by VPU for Women Engaged’s that were happening at the polls in who are making decisions about our phone and text banks to register new voters. Pennsylvania, and making sure that we were addressing them and putting out alerts about what was going on at polls… JD DAVIDS is a longtime HIV movement strategist People have that hotline [phone number] and writer who is creating the Cranky Queer Guide to so that they’re in the line and if they said, Chronic Illness and can be found @TheCrankyQueer. ‘Well, you can’t vote, we don’t see your He is a member of the What Would an HIV Doula Do name,’ they can make their phone call collective and is a board member of ME Action. right then and there.” As we enter 2021, people living with DISCLOSURE: The author has volunteered for Vote HIV and their loved ones have perhaps Positive USA and worked on two small contracts to

PHOTOS COURTESY OF VOTE POSITIVE USA JD • DAVIDS: SULLIVAN CARMONA guarded but real hope for the way provide written materials.

POSITIVELYAWARE.COM/SUBSCRIBE | JAN+FEB 2021 31 Who’s Zoomin’ who? Etiquette for a new era of video chat

video conference services allow you to see a test of what your camera is record- ing before you start broadcasting it to everyone else, so have it arranged the way you want it. Zoom, for instance, has a feature that lets you test your settings before your meetings begin: GO TO zoom. us/test.

Stay on mute if you’re not talking. Background noise can be really distract- ing. If you aren’t sharing anything at the moment, go ahead and hit mute until you do. That way, no one has to listen to the car alarm that goes off in your neigh- borhood or your neighbor’s perpetually barking dog.

Don’t eat during the meeting. It can be a little gross to watch other people eat sometimes. Or listen to them chewing, for that matter. Hold off if you can, or if not, maybe turn off the video and audio.

Don’t do other private things while on a meeting. et’s face it: communicating with Stage your video area. Speaking of gross: have you heard any others during stay-at-home advi- Keep in mind that people aren’t just see- horror stories about people being caught sories and working from home are ing you, they’re also seeing whatever the picking their nose or using the bathroom difficult. So here are some sugges- camera is pointed at behind you. Maybe while on a video conference, thinking tions, compiled from Zoom’s own arrange it so that your camera isn’t fac- they were muted or had their video off? Lwebsite as well as other sources, which ing towards a pile of unfolded laundry? Don’t become a statistic. It can be easy will help you stay productive, connected, For greater privacy, use a close-up video to forget that people can hear or see you and not-embarrassed as much as pos- or move the camera. For example, sit if you’re in a group of 30 coworkers, so sible while we struggle through this new with your back to a wall. Or, if your don’t risk it! era of office work and communication. computer or device allows, use a virtual Some of the most common-sense background for complete privacy. Stay focused. meeting decorum—avoiding eating and It’s a scientific fact that everyone hates drinking, minding your body language, More light is better. meetings. Don’t make this one go longer and being respectful to whoever is speak- Video quality is dramatically improved than it needs to. Stay on task (which can ing—are no-brainers. Here are some with more lighting. And don’t you want be very difficult while working at home) additional tips to help ensure a focused everyone to see your beautiful face, now and keep unnecessary conversations to and effective virtual meeting. that you’ve gone to all of the trouble a minimum. It can get very hard to be to put on actual clothes and stuff? An productive when several people are all Make sure to introduce everyone extra nearby lamp is usually helpful. Just talking at once. at the beginning. make sure the light is in front of you, not Just like a real meeting or social event, behind you—being backlit makes you If you’re the host, stick around. you wouldn’t initiate a conversation harder to see. The general rule for meeting hosts: Wait between two acquaintances who haven’t until everyone else has left the meeting met without introducing them. The same Try to look into the camera. before hanging up, so attendees can practice applies to a virtual meeting. If you’re presenting or speaking to a leave at their own pace and get any final Be sure to introduce all parties you are group, looking into the camera will give words in before disconnecting. Zoom will hosting at the beginning to create a the appearance of eye contact with assign an alternate host if the original welcoming environment and stimulate whomever you’re talking to. It’s also defi- host exits first, but it’s not a good look. A engagement. nitely better than being forced to stare host leaving everyone else in the meeting at your own face and realizing how badly is much like bailing on your own party. Use the video option when possible. you need a haircut. It lets people see you and confirm you’re ADAPTED FROM pennlive.com/coronavi- not some super-sophisticated AI voice. Do your own tech support before you start. rus/2020/04/zoom-meeting-etiquette- This is particularly important if you’re the Make sure you do a test run at some 15-tips-and-best-practices-for-online- one hosting the meeting or a speaker, point, and that you’re aware of your audio video-conference-meetings.html and blog. and slightly less so if you’re an attendee. and video settings before you start. Most zoom.us/video-meeting-etiquette-tips.

32 JAN+FEB 2021 | POSITIVELYAWARE.COM/SUBSCRIBE POZ ADVOCATE SCOTT SCHOETTES @PozAdvocate It’s a new day for people living with HIV in America

2020 was a challenging year in so many ways, and it Supreme Court ruling in Bostock capped off the very challenging four years of the Trump v. Clayton County in 2020. The administration. In June 2017, I led a group resignation from federal government cannot gain people’s trust and engage them in the Presidential Advisory Council on HIV/AIDS (PACHA) care while attacking them at every because it had become crystal clear in a few short months turn. (The Biden administration that Donald Trump was not going to take advice from us has also pledged to lift restric- (or anyone) and that he did not really care about people living tions on the military service of people living with HIV—more on with HIV or ending the HIV/AIDS epidemic. Sure, the leaders that in a future column.) at the Department of Health and Human Services got him to mention HIV in his State of the Union address in 2019 (a Treat Health Care as a Human “Teleprompter Trump” moment), but he never involved himself Right. Assuming the Affordable Care Act survives the Trump/ in the plan he announced that night, except to falsely brag Expect to see Republican-led challenge currently a Biden/Harris about all he was accomplishing. pending before the U.S. Supreme Court, expect to see a Biden/ administration That is not to say, however, that issued an executive order that Harris administration repair the repair the progress was not made on HIV would prevent federal contractors damage inflicted by Trump over damage during the Trump administration— and grantees from training people the past four years and build on inflicted by it was just progress made despite to recognize their implicit biases, the solid foundation provided by Trump, not as a result of anything to acknowledge different types of Obamacare. In addition to main- Trump over he did. As I said in the op-ed privilege they may possess, or to taining greater access to PrEP, the the past announcing the group resignation address structural racism and sex- survival of the ACA will sustain four years from PACHA, lots of career folks ism. Lambda Legal sued to stop expanded Medicaid eligibility, and build at HHS care deeply about HIV, and implementation of this executive access to health insurance for on the solid they continued to move things order in November, and President people with pre-existing condi- forward. We witnessed the intro- Biden will undoubtedly rescind tions, and protections against dis- foundation duction of the “Ending the HIV whatever remains of it on his first crimination in health care based provided by Epidemic: A Plan for America” and day. We will not eliminate the HIV on sex (which includes sexual ori- Obamacare. the beginning of its implementa- or COVID epidemics unless we entation and gender identity) and tion. It is a plan deeply rooted in address these racial and gender disability status. The importance a biomedical approach to ending inequities. of the ACA in defeating HIV cannot the epidemic: get everyone tested, be overstated. get everyone who tests positive Recognize and Promote the Civil into treatment, and get PrEP to Rights of Transgender and LGB There are a slew of other everyone at higher risk who tests People. The Biden/Harris adminis- things the Biden/Harris adminis- negative. All important features of tration will reverse course on what tration can—and likely will—do to any plan to end the HIV epidemic, has been a nonstop assault on improve engagement in care and but the Trump plan failed to the rights of transgender people the lives of people living with and meaningfully address social deter- during the Trump/Pence years. at higher risk for HIV. The above minants of health and barriers to Biden will undo the infamous steps are a good start—and I am implementation of the biomedical Trump tweet (and ensuing policy (once again) hopeful about what interventions. change) that prevented the open can be accomplished by a leader While I am confident that military service of transgender who believes in science and implementation of all of those bio- people—the subject of another embraces solutions to address medical approaches will continue Lambda Legal lawsuit—and will social determinants of health. under the Biden/Harris adminis- stop denying that gender identity It’s a new day! tration, we can also look forward and sexual orientation are covered to actions that will demonstrate under federal nondiscrimina- SCOTT SCHOETTES lives openly a commitment to addressing the tion laws. On this latter change, with HIV and is the HIV Project social determinants of health and Lambda Legal was at the forefront Director at Lambda Legal, where he dismantling barriers to care, such of the legal campaign to persuade engages in impact litigation, public as the following: courts to recognize that the policy work, and education to federal employment nondiscrimi- protect, enhance, and advance the Acknowledge and Address nation statute (Title VII) covers rights of everyone living with HIV. Structural Racism and Sexism. sexual orientation and gender In September, President Trump identity, leading to a favorable U.S.

POSITIVELYAWARE.COM/SUBSCRIBE | JAN+FEB 2021 33 POSITIVELY AGING Still advocating after all these years BY SAUNDRA JOHNSON

As POSITIVELY AWARE celebrates 30 years, I reflect on gleaned from studies of people the myriad ways this magazine has affected not only the aging with HIV/AIDS has lessons for the wider aging population— lives of people living with HIV/AIDS but also my life as an such as what chronic inflamma- HIV negative ally. tion does to the body, drug side effects and brain health, bone In 1990, I began volunteering read the debate over whether or health, and immune responses to at Open Hand Chicago, a meals not low-dose oral alpha interferon new technologies. delivery program for people living deserved a proper drug trial since I also use what I have learned with HIV. After three weeks, coor- there were anecdotal reports that to be my own healthcare dinators asked me to make a long it worked in Black people, but advocate. For instance, I have The magazine South Side route my regular route. not so much in others. Also, both idiopathic chronic congestive facilitated self- I loved it! Pretty soon I had a providers and clients found the heart failure (CHF), and the self- empowerment delightful young man as my driver report-back from major HIV/AIDS advocacy I learned from being in so that the and together we spent Friday conferences very helpful. HIV communities has saved my nights delivering food to mostly One enduring feature of the life more than once. It has led women living families of color. Many of the magazine is the HIV Drug Guide. me to clinical trials and helped with HIV/AIDS caregivers looked surprised to see It is a functional marvel covering me get medications through I worked with someone who looked like them. HIV drugs, side effects, and drug patient assistance programs could better When some of them started to interactions. Everyone I know, from pharmaceutical companies. navigate safer ask questions about the availabil- both client and provider, has Above all, I learned how to work ity of various services, I hit upon come to rely on it. Another valued in partnership with medical and sex, working in the idea of giving them POSITIVELY feature are the profiles of people social service providers. As I partnership with AWARE—in a plain white envelope living with HIV. age, I worry about some of the their medical so as not to out anyone’s status. It Because Test Positive Aware same things people living with providers, use was seldom mentioned but never Network (now known as TPAN) as HIV/AIDS worry about. What will safely, and was it refused. I repeatedly heard an organization was self-advocacy happen to me when I become that Black and Brown people focused, so was the magazine. The unable to care for myself at generally take abandoned their own, but here magazine facilitated self-empow- home or cannot afford my home, better care of were folk invisible to most, going erment so that the women living since I have neither a spouse themselves even about the daily business of taking with HIV/AIDS I worked with could nor children? I worry about under difficult care of a loved one, oftentimes better navigate safer sex, working suffering. I worry about becoming circumstances. alone. It was both beautiful and in partnership with their medical mentally incompetent. I worry heartbreaking to behold. providers, use safely, and gener- about being alone. Living wills, As time progressed and I got ally take better care of themselves advance directives, and powers of a better handle on my job, first even under difficult circumstances. attorney can only take one so far. as a case manager at Chicago Although I’ve retired and no I have come this far by watching Women’s AIDS Project and then longer formally work in HIV/AIDS, the struggles and successes of as a health educator at New York’s I use PA as a way to keep in touch my brothers and sisters living Gay Men’s Health Crisis (now with what is happening in the field. and dying with HIV/AIDS and by GMHC), PA became an indispens- In addition, the lessons learned adjusting accordingly my actions able resource for my clients. With are now being applied to my own toward myself and others. PA first-rate reporters and writers, life, especially as I age with chron- is essential to my continued issues affecting the everyday lives ic medical issues. The knowledge knowledge and well-being. of my clients were taken out of the closet and aired in public, so the fear, ignorance, and stigma SAUNDRA JOHNSON was an activist with could dissipate. ACT UP Chicago, HIV Case Manager with They got word about new and Chicago Women’s AIDS Project (CWAP), ongoing clinical trials that were and an HIV/AIDS-TB Health Educator with still enrolling, such as ACTG 175, GMHC. In addition, she was a part of the a landmark study that made spe- core faculty at the Black AIDS Institute’s cial effort to enroll at least 15% African American HIV University as well as women and had women-related a volunteer with several agencies providing sub-studies. They learned about services to people living with HIV. Even as informed consent so they wouldn’t Saundra has been on disability since 2013, be blindly signing up. They also she still advocates for herself and others.

34 JAN+FEB 2021 | POSITIVELYAWARE.COM/SUBSCRIBE Subscribe here. Our mission has always been to get dependable, accurate, timely information about HIV treatment and health into the hands of everyone who needs it—today, more than ever. If you’ve been picking up POSITIVELY AWARE, but would rather get it safely—and discreetly—delivered to your home, order a free subscription.

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IN PRINT. ONLINE. IN HAND. LIVE LIFE POSITIVELY AWARE. 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 dif cult 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: IsItWasting.com

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