POSITIVELY AWARE HIV TREATMENT, PREVENTION AND HEALTH FROM TPAN MAY+JUNE 2021

THE AIDS AT 40 FORGOTTEN A MATTER OF JUSTICE VACCINE NATIONALISM GENERATION IS KILLING US Cameron Siemers, 39, diagnosed with HIV at age seven resulting from a blood factor he received to treat his hemophilia, CONFERENCE UPDATE is among a generation of younger, long-term survivors VIRTUAL CROI 2021 NOT HAVING AS MUCH SEX? YOU’RE NOT ALONE POSITIVELY AWARE

JEFF BERRY EDITOR-IN-CHIEF @PAeditor

ENID VÁZQUEZ ASSOCIATE EDITOR @enidvazquezpa

ANDREW REYNOLDS HEPATITIS C EDITOR @AndrewKnowsHepC

RICK GUASCO CREATIVE DIRECTOR @rickguasco

SCOTT SCHOETTES LEGAL COLUMNIST @PozAdvocate

PROOFREADER JASON LANCASTER

PHOTOGRAPHERS HABEEB MUKASA DAVID FRANCO JOHN GRESS CHRIS KNIGHT

ADVERTISING MANAGER LORRAINE HAYES [email protected]

DISTRIBUTION MANAGER DENISE CROUCH [email protected]

SUBSCRIBE OR ORDER COPIES positivelyaware.com/subscribe

LIVE LIFE POSITIVELY AWARE.

FOR OVER 30 YEARS, PUBLISHED BY

5537 N. BROADWAY CHICAGO, IL 60640-1405 (773) 989-9400 fax: (773) 989-9494 [email protected] positivelyaware.com @PosAware

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 to share accurate, reliable, and timely treatment information with anyone affected by HIV.

BE GREEN. SHARE OR RECYCLE THIS MAGAZINE.

2 MAY+JUNE 2021 | POSITIVELYAWARE.COM/SUBSCRIBE MAY+JUNE 2021 POSITIVELY AWARE • VOLUME 31 NUMBER 4 • positivelyaware.com • @posaware

EVERY ISSUE THIS ISSUE CONFERENCE UPDATE VIRTUAL CROI 2021 5 12 EDITOR’S NOTE Neurocognitive impariment 24 The flip side of aging. in people living with HIV First HIV and now COVID-19 What you can do The president of the largest to stay sharp. historically Black academic 6 BY JOSH MATACOTTA, health center lays out BRIEFLY PSYD, CAHIMS the pandemic’s effects An injectable HIV treatment on different populations. that’s administered every two COMPILED BY ENID VÁZQUEZ months? Long-acting regimen 14 in development: islatravir The dawn of AIDS in 1981 and lenacapavir. The Lancet’s Forty years later, AIDS is 26 call to action for ending past, present, and future. Vaccine nationalism the HIV epidemic. DHHS BY MICHAEL BRODER is killing us updates its HIV and COVID-19 How inequities in research recommendations. and access to SARS-CoV-2 20 vaccines will perpetuate The forgotten generation the pandemic. 38 Young long-term survivors BY JEFF BERRY POZ ADVOCATE are often overlooked. Spring to summer to sex BY ENID VÁZQUEZ (with or without disclosure) PHOTOGRAPHY BY 29 BY SCOTT SCHOETTES DAVID FRANCO Some take-home messages from CROI COVID hospitalization, on- 40 35 demand PrEP with Truvada POSITIVELY AGING A matter of justice just as good as the daily pill, Not having as much sex? POSITIVELY AWARE webinar and more. You’re not alone shines a light on health BY ENID VÁZQUEZ BY MARK S. KING inequities among PLHIV during COVID-19. BY RICK GUASCO 30 41 Pregnancy update plus BEING BRIDGETTE HIV therapy for children Too young to be this old 42 A round-up of CROI reports. BY BRIDGETTE PICOU Looking deeper to dispel BY ENID VÁZQUEZ stigma and fear A Q&A with Anne Aslett, 44 CEO of the Elton John AIDS 32 FRONT COVER BACKSTORY Foundation. Highlights from CROI’s Symbol of longevity INTERVIEW BY JEFF BERRY Community HIV Cure BY RICK GUASCO Research Workshop A dialogue between biomedical HIV cure researchers and community members fosters deeper understanding of the science behind the search for an HIV cure. BY KARINE DUBÉ AND MICHAEL LOUELLA

ON THIS SPREAD AND ON THE COVER CAMERON SIEMERS, PHOTOGRAPHED BY DAVID FRANCO

POSITIVELYAWARE.COM/SUBSCRIBE | MAY+JUNE 2021 3 A new ‘Day’ springs forth THE EQUINOX only happens twice a year, when day and night are of equal length. It marks the changing of the season; in some ancient cultures, the equinox also signifies a change in thinking. For this reason, A Day with HIV, POSITIVELY AWARE’s anti-stigma campaign, has taken place on the autumnal equinox in September since 2010. This year, a new springtime version was added, coinciding with the vernal equinox. On March 20, people captured a moment of the first day of spring in pictures, and shared on social media how they are affected by HIV using the hashtag #adaywithhiv. Here’s a sampling:

10:00 AM: SAN JUAN, PUERTO RICO > JOIN IN THE “Esta semana me visitó una de mis parejas CONVERSATION sexuales y uno de mis mejores amigos para [email protected] hacerse las pruebas. El VIH se puede prevenir. ¿Te envío una prueba a ti también? @posaware Déjame saber.” POSITIVELY AWARE “This week one of my 5537 N. sexual partners and BROADWAY one of my best friends visited me to get tested. CHICAGO, IL HIV can be prevented. 60640-1405 Should I send you a test, too? Let me know.” ALL LETTERS, —Andres EMAIL, ONLINE POSTS, ETC. 2:30 PM: BALTIMORE, are treated as MARYLAND >> letters to the “Living with HIV has editor unless inspired me to become otherwise a warrior, so that I can instructed. help educate people and help get rid of the We reserve the toxic myths associated right to edit for with HIV.” —Nairobia length, style, or clarity. Let 5:29 PM: WINSTON-SALEM, us know if you NORTH CAROLINA > prefer not to have “Today I feel peaceful, your name or city accomplished, and mentioned. overall happy. Effects of inflammation from HIV and the many autoimmune issues GET YOUR that come with it are SUBSCRIPTION starting to make some OR ORDER days difficult, BULK COPIES but I will prevail!” —Nicole Elizabeth Dye 10:48 PM: LONGMONT, COLORADO >> “It just so happens that I received my first COVID-19 vaccine shot today! HIV was not considered a serious second pre-existing SCAN THIS QR CODE condition until the with your smart- fifth round in Colorado, phone, or go to but it is now. Take care positivelyaware. and get your vaccine! com/subscribe Thank you Out Boulder County for your vaccine initiative! — Andrew Espinosa

A Day with HIV returns Wednesday, September 22, 2021.

©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 Illinois 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 [email protected]. 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 MAY+JUNE 2021 | POSITIVELYAWARE.COM/SUBSCRIBE EDITOR’S NOTE JEFF BERRY @PAeditor

The flip side of aging

This year marks 40 years since the first cases of pneumonia were reported in five gay men in Los Angeles, all of whom later died. That same year we also heard about Kaposi sarcoma, then known as the “gay cancer,” being reported in gay men.

This is the story we’ve all come to know as the by Bridgette Picou about living and thriving with HIV beginning of the AIDS epidemic (see page 14). But as a woman of color. years earlier in 1968, Robert Rayford, a 15-year-old Like HIV, we’re now in the midst of another pan- African American male, presented with a strange demic that has forever altered our world. And yet series of infections that baffled doctors in St. Louis. many things remain the same, for better or worse. Three months after his 16th birthday in 1969, he died Institutional racism, White supremacy, the killing of of pneumonia. An autopsy revealed that Rayford had innocent Black and Brown people at the hands of Kaposi sarcoma lesions within and throughout his those sworn to serve and protect us—I often think, body, and thankfully tissue samples were preserved “it’s overwhelming,” but then stop myself. I mean, if In this issue, by the treating physician, knowing that one day they it’s overwhelming for me… And as a white cis man, do you will read might prove useful. I even have a right to say I’m overwhelmed? According to a Washington Post article in 2019, “In And then I read in The New York Times Magazine about some time, the case of a poor young African American who about an outbreak of pediatric HIV, “The City Losing of the younger apparently never left the Midwest would add a sur- Its Children to HIV,” by Helen Ouyang. Eleven hundred long-term prising twist to the understanding of a disease many children with HIV in a city of half a million people. It’s survivors we connected with gay white men in cosmopolitan coast- a devastating and heart-wrenching report, an indict- never hear about, al cities. Researchers would come to see Rayford as ment of a poorly run and drastically underfunded the country’s first known death from a strain of the healthcare system in Pakistan that was already on the the ‘forgotten human immunodeficiency virus, HIV, the virus that brink of collapsing before COVID, and now threatens generation.’ causes AIDS.” to wipe out any advances made in Ten years ago this month, we ending the HIV epidemic. Parents who published POSITIVELY AWARE’s AIDS put aside their own healthcare needs at 30 issue. On the cover we fea- to have their children treated by tured Marc, who was born with HIV. quack doctors who are incentivized to In my editor’s note, “The Year of give unnecessary injections and infu- Living Dangerously,” I recounted my sions, re-using needles, then often move to Chicago in 1981 just a few tossing them out the clinic window months after those first cases were into the street where children are reported, and how not long after, I playing. And I become overwhelmed developed a flu-like illness that I all over again. couldn’t seem to shake. I went on to But I push on, and I do the work, say that, “Like me, [Marc] also resid- as we all do, hoping and praying that ed in Chicago. Like me, he and his I’m making a difference. Trying to mother…didn’t learn until years later put into the world good energy, but that they were both HIV-positive. not always succeeding. Knowing And, like me, they are both still here. that each day, I have a choice to Our stories are so very different, and do things differently from the day yet, they are the same.” before. We’re all aging, and with age comes wisdom, In this issue, you will read about some of the right? So today I’m going to flip that aging coin, and younger long-term survivors we never hear about, see where it lands. Because whether it’s heads or the “forgotten generation.” Their stories and voices tails, it’s up to us to make the next move. remind us that there is indeed a flip side to HIV and aging that deserves our attention. Take care of yourself, and each other. Another thing we don’t always touch upon when it comes to aging with HIV is sex. Leave it to Mark S. King to approach the topic with humor and grace in this issue’s Positively Aging column. And Being Bridgette debuts in this issue, an ongoing column

POSITIVELYAWARE.COM/SUBSCRIBE | MAY+JUNE 2021 5 BRIEFLY

ENID VÁZQUEZ @ENIDVAZQUEZPA Briefly

DHHS recommendation on Cabenuva

An expert panel of the Department of Health and Human Services (DHHS) issued a recommendation in February that switching to Cabenuva to optimize An injectable treatment is seen as a good strategy. “Based on the clinical HIV treatment trial results from two large randomized controlled trials that’s administered [RCT, representing the gold standard in clinical research], the Panel recommends that every two months? once-monthly cabotegravir and rilpivirine intramuscular (IM) injections can be used as an optimization strategy for people with HIV currently on oral antiretroviral therapy (ART) with documented viral suppression for at least 3 months (although optimal duration is not defined) (A1 [recommendation]), who—

n Have no baseline resis- The FDA already approved Cabenuva in January as the Drug Application (sNDA) tance to either medication, first complete HIV drug therapy to be taken once a month, but was submitted based on the n Have no prior virologic soon, Cabenuva may also be taken just once every two months. results of a study showing failures [detectable viral that the two injections given load on treatment], The company that makes December 2020.) “This first- once every eight weeks was n Do not have active hepati- Cabenuva, ViiV Healthcare, of-its-kind regimen reflects non-inferior to administer- tis B virus (HBV) infection has asked the Food and Drug the evolving needs of people ing them every four weeks. (unless also receiving an Administration (FDA) to allow living with HIV, and, if this Those results came from oral HBV active regimen), its long-acting injectable expanded use is approved, the Phase 3b international n Are not pregnant and are treatment to be taken every could allow adults living with clinical trial ATLAS 2-M not planning on becoming eight weeks instead of every HIV to maintain virologic sup- (Antiretroviral Therapy as pregnant [due to lack of four. pression with six dosing days Long-Acting Suppression data in this population], “Today’s submission per year.” every 2 Months). n Are not receiving medica- of Cabenuva dosed every Cabenuva is adminis- Before taking Cabenuva, tions with significant drug two months marks another tered as two intramuscular individuals switching to it interactions with cabote- meaningful step forward in long-acting injections, must already be on a stable gravir and rilpivirine.” our ongoing commitment to in the butt muscle. One anti-HIV regimen and have bring innovative HIV treat- injection consists of ViiV’s undetectable viral load (less “Before initiation of the ments to the community,” cabotegravir and the other than 50 copies), and have IM injection, patients should said Kimberly Smith, MD, of rilpivirine, from Janssen no history of antiviral drug receive oral cabotegravir and MPH, Head of Research & Pharmaceuticals. Injections failure or resistance to cabo- oral rilpivirine for 28 days Development for ViiV, in a begin after one month of tak- tegravir or rilpivirine. as an oral lead-in period to press release dated February ing oral forms of the medica- For more about Cabenuva, assess tolerance to these 24. (See “At the nexus of tions (Vocabria and Edurant). GO TO Cabenuva.com or drugs. Clinicians should

body and soul,” November + ViiV’s supplemental New positivelyaware.com/Cabenuva. refer to the product label ERDIKOCAK-ISTOCK

6 MAY+JUNE 2021 | POSITIVELYAWARE.COM/SUBSCRIBE for information regarding IM bictegravir/emtricitabine/ clinical trials in combination Gilead’s lenacapavir is a cap- dose administrations as well tenofovir alafenamide with each other. sid inhibitor. Clinical study of as management strategies (Biktarvy), is now recom- According to a joint press the combination is expected for planned or unplanned mended as a Preferred release in March, “Islatravir to start later this year. missed doses.” ARV regimen for children and lenacapavir are both Exciting news. Stay tuned. READ MORE on the rec- aged 6 years and older potentially first-in-class ommendation regarding and weighing 25 kg and medicines in late-stage PleasePrEPMe Cabenuva at hivinfo.nih.gov. more [55 pounds and clinical trials, with significant moves to HealthHIV The panel noted that, more]. clinical data generated to “Switching to long-acting n The Panel now recom- date. Both medicines have PleasePrEPMe.org, a compre- injectable therapy can be mends raltegravir (RAL) long half-lives and have hensive online educational advantageous in patients for [Isentress] plus 2 NRTIs demonstrated activity at low resource originally created a variety of reasons, includ- as an Alternative inte- dosages in clinical studies, to bring together providers in ing but not limited to reduc- grase strand transfer which support development California with people inter- ing pill fatigue, disclosure inhibitor-based regimen as an investigational combi- ested in PrEP (pre-exposure concerns or stigma associ- for children aged 4 weeks nation regimen with long-act- prophylaxis, or prevention) ated with taking daily oral and older, rather than ing formulations, both oral and PEP (post-exposure pro- medications, and to improve Preferred, because of and injectable.” phylaxis), has gone national quality of life.” its twice-daily dosing The companies noted that, and moved to HealthHIV.org. requirement and lower “While daily, single-tablet reg- The user-friendly site provides Pediatric guidelines barrier to resistance com- imens are available for people information in both Spanish updated pared to DTG or BIC. living with HIV, options that and English. n Although the FDA has would allow for less frequent, At the time PleasePrEPMe A DHHS expert panel also approved abacavir (ABC) oral dosing or infrequent was formed in 2015, people updated its pediatric HIV [Ziagen] in infants aged 3 injections rather than daily interested in HIV prevention guidelines. Several medica- months and older, based dosing has the potential to medications often had dif- tions now have a different on reassuring safety data, address preference consid- ficulty finding a receptive recommendation, based on the Panel recommends erations, as well as issues medical provider. This was new data. There’s also infor- ABC plus lamivudine associated with adherence true even with the emergen- mation added about tele- or emtricitabine as a and privacy.” cy PEP schedule—treatment health communication and Preferred dual NRTI back- Merck is also developing must be started within 72 telemedicine vs. in-person bone for use in infants and islatravir in combination with hours of a known or suspect- clinic visits. children aged one or more the company’s doravirine ed exposure to HIV. Per the update: months old. (Pifeltro), and with doravirine “The opportunity to have n With the release of a new, n With the ability to use and ViiV Healthcare’s 3TC been a part of creating a dispersible tablet formula- ABC in infants and young (Epivir). Merck is also study- trusted, inclusive, welcoming tion of dolutegravir (DTG) children, zidovudine (ZDV) ing islatravir as a medication source of HIV prevention [Tivicay], DTG plus two is now recommended as for PrEP (pre-exposure information has been my new nucleoside reverse an Alternative NRTI for prophylaxis—prevention), honor,” said PleasePrEPMe transcriptase inhibitors use in infants and children including a once-monthly founder Shannon Weber, a (NRTIs) is now recom- aged at least one or more oral formulation. Renaissance woman who’s mended as a Preferred months old. Gilead’s lenacapavir has a social worker specializing antiretroviral (ARV) regi- data supporting use as a sub- in HIV services, an author, men for infants and young Long-acting regimen cutaneous injection adminis- an advocate, and an artist. children (aged 4 weeks in development: tered once every six months, “I am confident HealthHIV and older and weighing islatravir, lenacapavir for both treatment of HIV and will steward PleasePrEPMe 3 or more kg [6.6 pounds for prevention of the virus. to adapt and change in or more]) rather than Another complete long-acting Two PrEP studies are expect- response to community being limited to children HIV regimen is in the works, ed to begin this year. needs.” aged 3 and older and and is being studied as both The two medications come HealthHIV provides an weighing 25 kg or more. oral and injectable therapies. from drug classes not cur- extensive number of HIV pre- n Bictegravir (BIC), which Gilead Sciences and rently on the market. Merck’s vention and care training and is available as a compo- Merck announced an agree- islatravir is a nucleoside education programs, for both nent of the fixed-dose ment to develop two of their reverse transcriptase trans- individuals and health care combination (FDC) tablet long-acting drugs, still in location inhibitor (NRTTI). workers.

POSITIVELYAWARE.COM/SUBSCRIBE | MAY+JUNE 2021 7 Briefly

Out of the Closet thrift for Orlando shoppers to be of every dollar earned is designer and vintage goods. store opens in Orlando among the first to discover directed towards local HIV/ The selection is small, but the unique finds and hidden AIDS awareness efforts and exquisite. Sometimes funky Los Angeles-based AIDS treasures for which ‘Out of AIDS care to those in need.” fun. And not necessarily a Healthcare Foundation (AHF) the Closet’ is famous,” said Unlike the past, AHF now piggy-bank-breaker. has opened another of its Out Jonathan Kreuyer, general believes in PrEP. The New York-based of the Closet thrift stores, in manager of the stores, in an non-profit, in existence for Orlando, Florida. As with its AHF press release. “With 23 Housing Works offers more than 30 years, provides other thrift shops around other locations in California, thrifting online housing and support services the country, the store will Florida, Ohio, Georgia, and for homeless and unstably house a pharmacy and offer New York, AHF’s Out of the Housing Works opened an housed people living with free rapid tests for HIV and a Closet Thrift Store chain is online version of its own thrift HIV. It operates 10 thrift number of STIs. the nation’s largest retail stores back on National Thrift stores dotting Manhattan “The grand opening [in fundraising venture for HIV/ Store Day, August 17. This ver- and Brooklyn. GO TO eshop. February offered] the chance AIDS services, and 96 cents sion specializes in high-end housingworks.org.

Lancet’s call to action on Ending the HIV Epidemic

The Lancet Series “HIV in the USA” from the February 19 issue concludes with a “Call to Action” outlining the measures needed for Ending the HIV Epidemic initiative to succeed. Among the many items addressed in the call to action, U=U (Undetectable Equals Untransmissable, an education • campaign about how undetectable HIV virus may pose no threat of transmission) has a critical role to play. Ensuring that people living with HIV have the treatment and services they need to achieve and maintain an undetectable viral load not only saves lives, but also prevents new transmissions. . The Call to Action states:

n A national culturally competent effort is needed to raise awareness of U=U as a promising approach to reduce HIV stigma, which has a powerful potentiating role in both acquisition risks and treatment challenges. n Health-care professionals need to inform patients living with and affected by HIV about U=U n Advocates should be equipped to Providers should advocate for use of to improve, first and foremost, use the so-called public health the concept of Undetectable equals personal health, as well as public argument from U=U in advocacy to Untransmittable (U=U) in messaging health; sharing this information increase access and remove barriers and support all patients to remain might greatly improve the social to quality health care; ensuring virally suppressed. and emotional wellbeing of people people with HIV have the treatment living with HIV, reduce HIV stigma, and services they need to achieve To view the entire series, GO TO reduce anxiety associated with HIV and maintain an undetectable viral thelancet.com/series/HIVinUSA. testing, and help motivate treat- load not only saves lives, but also —MICHAEL BRODER ment uptake, treatment adherence, is an effective way to prevent new and engagement in care. transmissions.

THE LANCET

8 MAY+JUNE 2021 | POSITIVELYAWARE.COM/SUBSCRIBE DHHS updates HIV and COVID-19 recommendations

The Department of Health and Human Services (DHHS) on conditions when develop- warning signs and symptoms February 26 updated its COVID-19 recommendations for people ing vaccine priority. that warrant in-person eval- living with HIV (PLWH). Of note: PLWH should get vaccinated; n “People with HIV were uation, such as new dyspnea, it’s still not known if HIV leads to a greater risk for COVID-19 included in clinical trials of chest pain/tightness, confu- infection. Much of the new information is provided below. There the two mRNA vaccines; sion, or other mental status is also a discussion of COVID-19 treatments, which should be at this time, the safety changes.” used the same way in people living with HIV as in the general and efficacy in this population. READ THE UPDATES AT clinicalinfo.hiv.gov/sites/ specific subgroup default/files/guidelines/documents/HIV_COVID_19_GL__2021.pdf. have not been fully reported. People HIV and COVID-19 poor outcomes. In a cohort with HIV who are study in New York, people well controlled on According to the update, with HIV had higher rates of antiretroviral ther- “Whether people with HIV are hospitalization and mortality apy (ART) typically at greater risk of acquiring with COVID-19 compared to respond well to SARS-CoV-2 infection is cur- people without HIV. licensed vaccines. rently unknown. Data on the “In the general population, Guidance for these clinical course of COVID-19 in individuals who are at high- vaccines, including people with HIV are emerging. est risk of severe COVID-19 for people with HIV, In the initial case series from include those older than 60; is available through Europe and the United States, those who are pregnant; and the Advisory no significant differences those with comorbidities, Committee on in clinical outcomes were such as obesity, diabetes Immunization found between people with mellitus, cardiovascular Practices (ACIP) HIV who developed COVID-19 disease, pulmonary disease, and from the Infectious “Be aware that people with and individuals without HIV. smoking history, sickle cell Diseases Society HIV with additional comor- For example, data from the disease—as well as solid of America (IDSA). bidities may be eligible for Veterans Aging Cohort Study organ transplant recipients,” Confidentiality about one of the anti-SARS-CoV-2 compared outcomes in 253 the report continued. “Many their underlying condition monoclonal antibodies avail- mostly male participants people with HIV have one or should be preserved when able through Emergency Use with HIV and COVID-19 who more comorbidities that may administering vaccines to Authorization from the FDA.” were matched with 504 par- put them at increased risk people with HIV. Added to the paragraph ticipants with only COVID-19. for a more severe course of n “Current recommen- on greater risks of domestic In this comparison, no differ- COVID-19. Both COVID-19 and dations of the ACIP, violence during quarantine ence emerged in COVID-19 HIV disproportionately affect the American College are the italicized words here, related hospitalization, inten- communities of color. Based of Obstetricians and “Reports indicate that some sive care unit (ICU) admission, on the available literature, Gynecologists (ACOG), measures designed to control intubation, or death between close monitoring is warranted and the Society of the spread of COVID-19 may patients with or without HIV. for all people with HIV and Maternal Fetal Medicine increase the risk of intimate In contrast, worse outcomes, SARS-CoV-2 infection, espe- (SMFM) state that preg- partner violence and/or child including increased COVID- cially those with advanced nant and lactating people abuse, as well as limit the 19 mortality rates, in people HIV or with comorbidities.” who otherwise meet crite- ability of people to distance with HIV have been reported ria for vaccination should themselves from abusers or in other cohort studies from Vaccination in HIV not be restricted from to access external support. the United States, the United vaccine access (ACOG, Providers should assess Kingdom, and South Africa. “People with HIV should 2020). The CDC also pro- patient safety at each clinical In a multicenter cohort receive SARS-CoV-2 vac- vides information about encounter, either in-person study of 286 patients with cines, regardless of CD4 vaccine considerations for or via telemedicine, being HIV and COVID-19 in the or viral load, because the people who are pregnant cognizant of the patient’s United States, lower CD4 potential benefits outweigh and breastfeeding.” ability to speak privately.” count (less than 200 cells/ potential risks,” the guide- mm), despite virologic sup- lines advise. Links are provided in the Clinicians are referred to the pression [undetectable viral document. NIH COVID-19 Treatment load], was associated with a n “Based on recent lit- Guidelines (covid19treatment- higher risk for the composite erature to date, people Other new considerations guidelines.nih.gov/whats- endpoint of ICU admission, with HIV appear to be at new), which have a section mechanical ventilation, or increased risk for severe “New onset or worsening on “Special Considerations in death. In another study of 175 outcomes with COVID-19 dyspnea [difficulty breath- People with HIV.” patients with HIV and COVID- compared with people ing] warrants in-person A lengthy section on 19, a low CD4 count or CD4 without HIV and should evaluation.” pregnancy and another on nadir [lowest number ever be included in the cate- “Patients and/or care- children living with HIV have

ISTOCK found] was associated with gory of high-risk medical givers should be aware of been added.

POSITIVELYAWARE.COM/SUBSCRIBE | MAY+JUNE 2021 9 12 MAY+JUNE 2021 |POSITIVELYAWARE.COM 2021 MAY+JUNE with HIV with What youWhat can do to sharp stay Neurocognitive Neurocognitive BY JOSH MATACOTTA,BY JOSH PsyD in people living impairment , CAHIMS /SUBSCRIBE

With the introduction the With ADHD, or other learning disabilities. disabilities. learning ADHD, other or treatment, it is disheartening to to disheartening is it treatment, (or HAART), there(or a has been HAART), People who have to access Concerns about neurocognitive neurocognitive about Concerns life. Although there has been an an life. Although been there has impairment persist for PLWH. impairment era. in the HAART increase in the accessibility of H of cognitive cause Determining root the highly active antiretroviral therapy antiretroviral highly active people living with HIV (PLWH). from HIV or other causes. Some people people Some causes. other or HIV from number of cases of neurocognitive neurocognitive of cases of number medications and quality care medications quality care and tion by a mental health professional. professional. health by amental tion tioning. While of symptoms are MCI that involves executive, motor,that executive, involves attention, impairment requires an extensive evalua impairment extensive an requires i in two cognitive domains but does not does domains but cognitive in two impairment cognitive noticeable involves impairments to varying severity and fre and severity impairments to varying health conditions such as depression, depression, as such conditions health dramatic reduction in HIV-related HIV-related in reduction dramatic rience moderaterience to severe impairments memory, and less commonly language language commonly less and memory, more severe forms of HAND caused by caused of HAND forms severe more difficult to ascertain whether they result they whether difficultascertain to always disrupt daily activities or func or always disrupt daily activities important. diagnosis accurate see thatsee there are still asignificant cognitivesevere disorders in quency. The range of is HIV-related NCI quency. range The a general term to dysfunction describe uncontrolled HIV replication in cerebro replication HIV uncontrolled opportunistic infections opportunistic and (CNS) system central nervous can enjoy full a can productive and orders (HAND). HAND syndrome is clas- (HAND). syndrome orders HAND e c central nervous system damage from from damage system nervous central living with HIV may also manage mental mental living with may manage HIV also spinal fluid and brain tissue. People with spinalPeople fluidbrain tissue. and sified as asymptomatic neurocognitive neurocognitive asymptomatic as sified symptomatic HAND, thus making early symptomatic thus early HAND, making that people with ANI may progress to may with progress ANI that people mpairment (ANI), mild neurocognitive neurocognitive mild (ANI), mpairment ANI. There is some evidence to suggest to suggest evidence is some There ANI. impairment (MCI), HIV-associated or alled HIV-associated neurocognitive dis asier to recognize compared to it is ANI, compared to recognize asier IV-associated dementia, or HAD, expe HAD, or dementia, IV-associated definition of ANI means up to 20% up 20% means ANIto definition of ofas sustaining PLWH is classified population typical of cognitively the dementia (HAD). T MCI, or mild neurocognitive disorder, mildMCI, or neurocognitive Neurocognitive impairment (NCI) is is (NCI) impairment Neurocognitive hanks to HAART, we see less of the less we see tohanks HAART, domains. Unfortunately,domains. broad the despite using formal neuropsy using formal despite p chological testing to testing evaluate chological erformance in several cognitive cognitive in several erformance ANI is challengingANI to diagnose of

- - - - -

- -

ISTOCK in cognitive functions and considerable symptoms or concerns you might have when I can exercise!” We manage to difficulties in everyday functioning. about neurocognitive impairment. find time to do things for work or other Antiretroviral medications that penetrate people but are not so great at making the blood-brain barrier can improve cog- Focus on mental health time for ourselves. Don’t put off things nitive impairment, especially as people and well-being that are important to your health and achieve complete viral suppression. Why Take care of your emotional well-being well-being. Schedule time in advance then do we still have concerns about and mental health. Depression, learning if you must for exercise and make it a neurocognitive impairment for PLWH in disabilities that persist in adulthood, habit. Your brain will thank you for it. the age of HAART? age-related cognitive decline, and other Unfortunately, despite successful viral mental health concerns may contribute Engage in new and novel activities suppression, virus that escapes into the to decreased cognitive functioning. For Finally, studies have shown that novel cerebrospinal fluid might explain some example, people with untreated depres- activities and experiences shape our cases where HAND persists. While most sion often report difficulty with memory brain’s structure and organization. antiretroviral medications penetrate the and attention or experiencing “brain fog” Activities that stimulate the mind like blood-brain barrier, poor drug concen- as a result of fatigue and depression. It reading and puzzles will help keep you tration in the central nervous system is important to continue treatment with sharp. The Synapse Project conducted may result in milder forms of cognitive a licensed mental health professional a study with 221 participants ranging in impairment. Other explanations include should any of these issues be relevant age from 60 to 90 to assess the effect persistent immune activation or chronic to you. of sustained engagement on cognitive inflammation. Shortly after starting treat- After you read this, I’d like you to set function. A key takeaway from the study ment, people typically experience a sharp some time aside to do a self-check inven- was activities that require active learning decrease of systemic inflammation but tory. This is an oppor- and sustained use not to normal levels. Other medical condi- tunity to reflect on It’s normal for people of working memory, tions such as cerebrovascular disease and your internal process long-term memory, hepatitis C co-infection may contribute to and environment to become a little more forgetful and other executive neurocognitive impairment. and ask yourself a or to take a bit longer to processes caused a Aging with HIV is another factor that few key questions. remember a word or name significant increase challenges our complete understanding How are you feeling now and then as they age. in episodic memory. of HAND. There is an ongoing debate right now? Much of However, having consistent Episodic memory about premature aging or accelerated what a person feels or increasing concerns about refers to a type of aging for some age-related medical is caused by what your cognitive performance memory involved conditions like cardiovascular disease they say to them- warrants further exploration. in recalling specific in PLWH. It is not entirely clear if this selves. People talk to situations or events. suspected pattern of aging is present in themselves all day Even the experience neurocognition. Several studies suggest long with little awareness of it. Self-talk of learning something new can reinforce that HIV might accelerate brain aging is automatic and carried out repeatedly. a growth mindset and boost confidence through chronic neuroinflammation. When we are not sure why something in the ability to learn something new. However, study findings are inconsistent is the way it is, we often start looking and complicated by comorbidities and outside of ourselves for the source of Conclusion the significant differences in life trajecto- unhappiness. That’s okay to do! But be Remember that your brain is just as ries of PLWH. The pathogenesis of HAND sure to check your self-talk and internal important as the other organs of your continues to be studied, as are the roles process. Continue your self-check by body, and it changes as you grow older. of age, antiretroviral neurotoxicity, and reflecting on how you spend most of It’s normal for people to become a little comorbidities. your days. What takes a lot of time and more forgetful or to take a bit longer to Biomarkers and improved assess- effort? Are you engaging in activities or remember a word or name now and then ment tools will help further our under- hobbies that you enjoy and find fulfilling? as they age. However, having consistent standing of HIV and neurocognition How much sleep are you getting on or increasing concerns about your cogni- so that we can identify neurocognitive average? Can you quickly name a few tive performance warrants further explo- impairment in the asymptomatic stage reliable and trustworthy friends or family ration. If you commonly lose your train before further deterioration. Several neu- members to reach out to if you were in a of thought, have difficulty with tracking roimaging techniques have been used to bind? Remember to conduct a self-check a conversation, or struggle to find your evaluate brain structure and function but throughout the year. way around a familiar environment, talk are not widely used in clinical practice. to your doctor. Mild neurocognitive Nutrition and exercise impairment may not always be prevent- What you can do to keep sharp: There is plenty of evidence to suggest able. But research shows there are many that diet and exercise have a positive things you can do to prevent it or slow its Stay informed impact on brain health. Maintaining a progression. You’re doing this now! Learning about healthy diet combined with aerobic and HAND and staying informed on all things resistance exercise is an effective way Josh Matacotta, HIV will serve you well in the long run. to counter age-related cognitive decline, PsyD, CAHIMS, is Increasing your understanding of com- and will help with HAND. Avoid tobacco, an assistant profes- mon co-occurring conditions can inform alcohol, and other substances that are sor in the College of your conversations with healthcare known to negatively impact brain health. Health Sciences at providers. If you have concerns about Eat a nutrient-rich diet that consists of Western University cognitive function, talk to your primary fruits and vegetables while minimizing of Health Sciences. care doctor, who can refer you to a the amount of processed food you eat. He also serves as specialist. Stay engaged in treatment Make time for exercise. I’ve often board president and let your doctor know that you wish heard (and have said to myself), “Well, and researcher to be a collaborative partner in your care. I’m not a morning person and I’m too at the Integrated Always ask questions and report any new tired at the end of the day. I don’t know Behavioral Health Research Institute.

POSITIVELYAWARE.COM/SUBSCRIBE | MAY+JUNE 2021 13 FORMED IN RESPONSE TO THE EPIDEMIC, THE AIDS COALITION TO UNLEASH POWER (ACT UP) WAS FORMED IN NEW YORK IN 1987, AND SOON LOOSELY AFFILIATED GROUPS WERE LAUNCHED IN CITIES AROUND THE WORLD, INCLUDING CHICAGO, WHERE THIS DIE-IN PROTEST WAS HELD.

THE DAWN OF AIDS IN 1981 Forty years later, AIDS is past, present, and future BY MICHAEL BRODER

his year marks the 40th anniversary of the start of AIDS in 1981. rosy prognosis is far from uniform—bet- To me, a 60-year-old gay man who was a closeted college student ter in North America, for example, than in sub-Saharan Africa, and better in when the epidemic began, 1981 seems like yesterday. But it’s not some demographic groups than others, really yesterday. The world has changed a great deal in 40 years. depending on factors like race, ethnicity, And yet AIDS is still with us. gender, income, and access to health- T care, to name just a few. Worldwide, there are about 38 million 33 million have died from AIDS-related Today we have medications that people living with HIV, the virus that illnesses. can prevent HIV infection, but we still causes AIDS. Since the beginning of Today there are highly effective treat- don’t have a vaccine (compare that to the epidemic, about 76 million people ments that allow many people with HIV COVID-19, for which two vaccines were worldwide have acquired HIV, and some to have decades of good health. But that developed within one year after the virus

14 MAY+JUNE 2021 | POSITIVELYAWARE.COM/SUBSCRIBE penchant for journalism, Lawrence Mass, men died within 24 months of their KS wrote an article for the New York Native, diagnosis; by contrast, the mean survival a pioneering gay tabloid, seeking to get time among typical older males with the at the truth of the rumors. Mass inter- disease was eight to 13 years. viewed Steven Phillips, an epidemiologist Among the young gay men diagnosed from the federal Centers for Disease with KS, several had serious infections, Control and Prevention (CDC) who had including PCP, toxoplasmosis, severe been assigned to the New York City herpes simplex, severe candidiasis, and health department. Phillips confirmed cryptococcal meningitis, as well as past that a number of gay men had been or present CMV. The term “gay cancer” treated recently in New York City hospi- now joined the recently coined “gay tals for Pneumocystis carinii pneumonia men’s pneumonia” in the public lexicon. (PCP), a fungal pneumonia usually seen Cases of KS, PCP, or both, in conjunction only in people with severely compro- with other serious infections, continued mised immune systems. Wittingly or to mount in New York, San Francisco, not, Phillips minimized the significance and Los Angeles, overwhelmingly among of these cases, telling Mass that the young gay men. rumors of a disease affecting gay men The KS story was picked up by were largely unfounded. The New York Times as well—the first At the time, Mass’s article in the mention of the mysterious new scourge Native went largely unnoticed outside the in the nation’s touted newspaper of local gay community. On June 5, however, record. Key elements in the story of AIDS the Morbidity and Mortality Weekly Report were already clear by then. One doctor (MMWR), a publication of the CDC, pub- quoted in the Times said that most cases lished a brief item on recent cases of PCP had involved gay men with “multiple in young gay men. I’ll quote in full the and frequent sexual encounters with three sentences that go down in history different partners, as many as 10 sexual as the Hindenburg of AIDS: encounters each night up to four times “In the period October 1980–May a week.” In addition, a number of gay 1981, 5 young men, all active homosex- men with KS, PCP, and other serious uals, were treated for biopsy-confirmed infections had deficient T cells and B Pneumocystis carinii pneumonia [PCP] cells—components of the immune at 3 different hospitals in Los Angeles, system that play a role in fighting California. Two of the patients died. All 5 infections as well as cancer. patients had laboratory-confirmed pre- The Times also noted that many of vious or current cytomegalovirus (CMV) the young gay men with this striking and infection and candidal mucosal infection.” unusual cluster of diseases had reported That’s it. Forty-eight words. The first using “drugs such as amyl nitrite and attack had been launched. The invasion LSD to heighten sexual pleasure.” Amyl had begun. The MMWR article was nitrite is poppers, and the belief that reported by The Associated Press, the AIDS was related to poppers would take Los Angeles Times, and the San Francisco firm root in both the medical community Chronicle, spurring reports to the CDC from around the U.S. of similar cases of FATEFUL HEADLINE IN THE PCP, Kaposi sarcoma (KS), and LOS ANGELES TIMES, JUNE 5, 1981 other unusual presentations of severe infections among young gay men. Within weeks, mem- bers of the gay community were calling PCP “gay men’s pneumonia.” Just a month later, MMWR THE DAWN OF AIDS IN 1981 reported 26 cases of KS in the previous 30 months among young gay men in New York and California (mostly San Francisco). A very rare skin was identified, with a third now available cancer, KS is usually found WINDY CITYWINDY TIMES and more in the pipeline). in elderly men of Eastern Today, AIDS is past, present, and European, Middle Eastern, future—and that is how we will explore it and Mediterranean descent. in the remainder of this essay. Its appearance in these num- bers among men so young, all The advent of AIDS unfolded like a movie of whom were gay, was highly montage of newspaper headlines. In unusual, and the doctors the spring of 1981, there were rumors in who identified these patients New York City’s gay community about were quite alarmed. The an exotic new disease affecting gay men. cancer was also unusually

LISA HOWE-EBRIGHT, COURTESY OF OF COURTESY HOWE-EBRIGHT, LISA In May, a young medical doctor with a aggressive—eight of the

POSITIVELYAWARE.COM/SUBSCRIBE | MAY+JUNE 2021 15 and the popular imagination in the of a mainstream national magazine. following years. Campbell co-founded People With AIDS Experts did not know how or even if San Francisco in 1982, and a year later this cluster of KS, PCP, and other serious collaborated with men from across the diseases in gay men was related. But U.S. to write The Denver Principles, the members of the medical community founding document of the burgeoning who treated these patients and affected self-empowerment movement among members of gay communities in the people with AIDS. Campbell died in 1984 nation’s urban gay meccas of New York, at the age of 32. San Francisco, and Los Angeles could only surmise that something very, very As the first year of AIDS drew to a close, bad was happening. there were over 300 reported cases of One August night, gay novelist Larry people with severe immune deficiency in Kramer, then known especially for his the U.S., of whom 130 died by December groundbreaking 1978 novel Faggots, 31. Cases had also been reported in gathered scores of gay men to his Spain and the United Kingdom. Medical New York City apartment to discuss experts remained in the dark about what the emerging health crisis. The guest was causing the immune deficiency that speaker was Alvin Friedman-Kien, one laid people vulnerable to otherwise rare of the dermatologists who contributed infections like PCP, cancers like KS, other the initial case reports of KS in gay men. serious infectious diseases, and ultimate- Kramer solicited contributions to sup- ly death. The general public was still port Friedman-Kien’s research, because largely unaware of the emerging crisis. there was no other funding readily avail- There had been no congressional hear- able to confront the burgeoning crisis. ings, no funding provided for research. A series of meetings like this would The early center of gravity for the ultimately lead to the creation of both medical response was the University of Gay Men’s Health Crisis (GMHC) in 1982 California, San Francisco (UCSF) Medical and AIDS Coalition to Unleash Power Center, where Marcus Conant and Paul derive from an MMWR article published (ACT UP) in 1987, both of which were Volberding co-founded the nation’s first in March 1983). spearheaded by Kramer, who remained dedicated KS clinic, and they along with an ardent (and often controversial) AIDS their UCSF colleagues Connie Wofsy and THE DIY PUBLICATION OF the pioneering activist the rest of his life until his death Donald Abrams took the lead in treat- safer sex pamphlets Play Fair!, written by at the age of 84 last year. ment and research. members of the San Francisco Order of the Sisters of Perpetual Indulgence, and As winter approached, New York pediatric At the rate I am telling the story, this How to Have Sex in an Epidemic, written immunologist Arye Rubinstein treated would be an excerpt from an 80,000- by boyfriends Richard Berkowitz and five Black infants with signs of severe word book. We don’t have room for Michael Callen (a member of the gay immune deficiency, including PCP. that here. And there are plenty of ways male a cappella group The Flirtations). Several were children of women who you can get the whole story—or many used drugs and engaged in sex work. different parts of the whole story, as THE PUBLICATION OF The Denver Dr. Rubenstein’s assertion that these no one book or film or theatrical work Principles, the founding manifesto of the children were suffering from the same can capture the complexity of the AIDS National Association of People with AIDS, condition that was being observed in epidemic, its origins, its unfolding, its proclaimed by a group of gay men who young gay men was initially dismissed by legacy forty years later. Let’s try it in 39 stormed the plenary stage of the Second his medical colleagues, but this would more sentences or less: National AIDS Forum in Denver. ultimately prove to be the moment when AIDS emerged in the Black community, THE FOUNDING IN 1982 of both GMHC in THE MORE-OR-LESS simultaneous dis- driven among men, women, and children New York and the San Francisco AIDS covery of the virus that causes AIDS, by sexual contacts, injecting drug use, Foundation (under its earlier name, by the laboratory of French virologist and mother-to-child transmission. The Kaposi’s Sarcoma Research and Luc Montagnier (1983) and that of U.S. Also that winter, Bobbi Campbell, Education Foundation). virologist Robert Gallo (1984)—originally a 29-year-old nurse and a member of called human T-lymphotropic virus III the gay community in San Francisco, THE BRIEF EMERGENCE of the term (HTLV-III), and later renamed human became the first to go public with his KS gay-related immune deficiency (GRID) immunodeficiency virus (HIV). diagnosis, calling himself the “KS Poster to describe the outbreak, until the CDC Boy” and writing a regular “Gay Cancer came up with acquired immune deficien- THE CLOSING OF gay bathhouses in San Journal” column in the San Francisco cy syndrome (AIDS), which stuck. Francisco (1984) and New York (1985). Sentinel to chronicle his experience. To CITYWINDY TIMES alert the community and encourage peo- THE OPENING OF Ward 86 at San THE DEATH OF Rock Hudson due to AIDS- ple to seek treatment, Campbell posted Francisco General Hospital as the world’s related illness at the age of 59, who left photos of his KS lesions in the window first dedicated outpatient AIDS clinic. $250,000 in his will to help set up the of a local drugstore. Two years later, American Foundation for AIDS Research Campbell would appear on the cover THE POPULAR USE of the term “4H club” (amfAR), co-chaired by Elizabeth Taylor of Newsweek with his partner Bobby as shorthand to refer to the groups and medical researcher-cum-socialite Hilliard, illustrating the cover story “Gay perceived to be at risk for the disease— Mathilde Krim. America: Sex, Politics, and the Impact homosexuals, hemophiliacs, heroin of AIDS.” This was the first time two gay users, and Haitians (while the CDC did THE OPENING off Broadway of Larry

men were shown embracing on the cover not coin the term, its use appears to Kramer’s play The Normal Heart at OF COURTESY HOWE-EBRIGHT, LISA

16 MAY+JUNE 2021 | POSITIVELYAWARE.COM/SUBSCRIBE We cannot close countries—the very same men who the cover of our first bore the overwhelming brunt of the MacBook, however, emerging epidemic 40 years ago. That is without mentioning a blessing; but we must always bear in three things. First, mind that the AIDS epidemic still rages the formation of in specific regions and among specific ACT UP in 1987, the populations the world over. On a global activist group that scale, the epicenter of AIDS has long used direct-action since shifted to sub-Saharan Africa, strategies and followed by Asia and the Pacific (the tactics to radi- Caribbean as well as Eastern Europe and cally change the Central Asia are also profoundly affected). response of govern- Today, more than half of all adults around ment, the medical the world living with HIV are women, and establishment, and HIV is the leading cause of death among the pharmaceu- women of reproductive age. Globally, tical industry to young people (ages 15 to 24) account for AIDS. Second, the about a third of new HIV infections annu- remarkable history ally. And about 1.8 million children are liv- of treatment for HIV ing with HIV worldwide. In the U.S., Black infection (antiret- and Latinx people are disproportionately roviral therapy), affected by HIV. Among all groups in the starting with AZT U.S., the rate of new HIV diagnoses is in 1987, passing highest among those ages 25 to 34. The through milestones largest proportion of HIV cases in the like the advent of U.S. continues to be attributed to sexual CHICAGO PROTEST, LATE 1980s protease inhibitors contact between men. and triple-combi- New York’s Public Theater, and the nation therapy in 1996, and flourishing As we mark 40 years of AIDS, we still opening of As Is, by William M. Hoffman, today with multiple classes of drugs and await a vaccine to prevent HIV, and a the first play about AIDS to open on ever more safe, effective, and convenient cure for people who are living with it. Broadway (1985). drugs and regimens. And third, the The remarkable development of vaccines ascendency of treatment as prevention to prevent COVID-19 has benefited THE BANNING from school of Indiana in several forms—treatment of women immeasurably from 40 years of HIV teenager Ryan White, who acquired HIV during pregnancy and delivery, and of research. Ongoing efforts to develop through contaminated blood products infants after birth, to prevent vertical antiviral treatments for SARS-CoV-2, the used to treat his hemophilia, and who (mother-to-child) transmission; post-ex- virus that causes COVID-19, also rely becomes an outspoken advocate for AIDS posure prophylaxis (PEP) after a sexual heavily on the pharmacologic science of research and public education (1985). or occupational exposure; pre-exposure HIV—namely, the strategy of targeting prophylaxis (PrEP), meaning the use viral proteins and using combinations of THE FIRST PUBLIC MENTION of AIDS by of HIV drugs by people without HIV to antiviral drugs, targeting different viral President Ronald Reagan, who called it a prevent them from getting it; or virologic proteins, to more effectively and durably top priority and defended his administra- suppression in people living with HIV suppress or eliminate viral replication. tion’s (lack of) response to the epidemic (today often referred to as “undetectable Even the person leading the scientific (1985). equals untransmittable,” or U=U, which and medical charge against COVID-19 is the concept that people with HIV in the U.S., Dr. Anthony Fauci, was tem- THE BIRTH OF the AIDS Memorial Quilt, whose virus is suppressed by effective pered in the crucible of the AIDS epidem- with the creation of the first panel by San treatment cannot transmit the virus to ic. Similar observations could be made Francisco AIDS activist Cleve Jones to sexual partners). about the development of treatments— honor his friend Marvin Feldman (1987). One final thing that must be stated and in some cases cures—for hepatitis as we mark 40 years of AIDS: the contin- B and hepatitis C, as well as other viral THE DEATH OF flamboyant pianist and ually evolving demographics of the epi- infections and cancers. We as individuals showman Liberace due to AIDS-related demic. AIDS was first recognized as an affected by HIV and AIDS, and we as a illness at the age of 67. Unlike Rock outbreak among mostly gay white men society and a culture marked indelibly Hudson, Liberace hid his illness, and ages 25 to 49 in a handful of urban cen- by this disease, have much to grieve, as his gayness, to the end of his life (his ters in the U.S. Clinicians and epidemi- well as much to be grateful for, at this publicist maintained that he died of com- ologists soon realized that the epidemic moment in the history of AIDS. plications from a watermelon diet, until also encompassed non-gay men, women, a court-ordered autopsy determined the people of color, and children born to Michael Broder is a gay, white, poz, true cause of death). mothers with HIV. Moreover, they real- Jewish, male, late-Boomer Brooklyn ized that HIV could be transmitted not native (b. 1961). Columbia undergrad, We are about out of space, and we are only through sex, but through contami- MFA in creative writing from NYU, and only up to the winter of 1987. AIDS at nated blood products, sharing needles to PhD in classics from the CUNY Graduate 40 is indeed a long and complicated inject drugs, and from mothers to their Center. He tested HIV-positive in 1990, tale, by turns grim, heroic, and at times infants during pregnancy, delivery, or and started doing AIDS-related jour- even exhilarating (see either the original breastfeeding. nalism while collecting unemployment Broadway production, the 2003 HBO Today, the greatest beneficiaries of insurance in 1991. He lives in Bed-Stuy miniseries, or the 2017 West End revival effective treatment and prevention for with his husband and several feral back- of Tony Kushner’s Angels in America). HIV have been gay white men in affluent yard cats.

POSITIVELYAWARE.COM/SUBSCRIBE | MAY+JUNE 2021 17 COVER STORY

THE FORGOTTEN GENERATION Young long-term survivors are often overlooked BY ENID VÁZQUEZ

20 MAY+JUNE 2021 | POSITIVELYAWARE.COM/SUBSCRIBE ith growing attention now focused on older people living with HIV, it’s easy to forget the young people, now mostly into their 30s, who acquired the virus in childhood. They too are long-term survivors aging with HIV. They’re just not what many people think of when they hear the words “long-term survivor” or “aging with HIV.”

W“When I hear a lot of information are forgotten about. It’s more like we’re about aging or long-term survivors, a never really thought of at all,” Siemers lot of times those two are mistakenly says. intertwined,” says GRISSEL GRANADOS, “It’s not better or worse, it’s just dif- who acquired HIV around the time of her ferent,” he says. “A lot of us who grew up birth 36 years ago. with it have different issues and different “Yes, there are folks who were adults, problems and relating, in general, is or young adults, when they acquired HIV,” harder. I’m not gay, and I’ve met plenty Granados continues, “but then there are of gay people and they’re brave and also those of us who were born with HIV amazing, but as far as relating in certain ‘The bonds I have with people who’ve or acquired it in childhood and who are support groups, there are so many dif- grown up with HIV—there’s almost still under 50. We’ve been living with HIV ferent problems they have that I never an instant connection when I meet longer than a lot of people who are also really had to face. A lot of us talk about somebody new, even now, and long-term survivors. We have been on that, how the support groups are mostly I’m not that young anymore.’ medication for decades, and so we can geared towards—and rightfully so—the Cameron Siemers experience a lot of similar issues that our gay and transgender population.” older counterparts are facing as well.” Siemers finds a special solace It’s not a question of pitting one from other people his age who also group against another. Since the predic- grew up with the virus, no matter their tion was made that the majority of peo- differences. ple living with HIV would be over 50 by “The bonds I have with people who’ve the year 2015 (CDC didn’t make it official grown up with HIV—there’s almost an until 2018), a lot of attention has gone to instant connection when I meet some- this group. body new, even now, and I’m not that But clearly, long-term survivors are young anymore. But the ones I have with not only people over 50. the people I grew up with are amazing,” Stigma. Pill fatigue. Complications says Siemers. “Having had that connec- from the virus. Time may not heal these tion as a kid really helped me a lot, and wounds. Twenty years is twenty years, I think helped them as well. I guess it’s whether you started at age 25 or at five just like, Oh, you get it. That feeling of years old. not being alone was, and still is, very As Granados noted when titling the supporting. We all as a kid didn’t really 2016 documentary she produced to come out. It was a secret we had for a remind the world that many children long time.” had also survived: We’re Still Here. (See Young people, however, come of the July+August 2016 issue of POSITIVELY age and scatter across the country for AWARE.) school, work, and other opportunities. The children who met in summer camps “I AM A LONG-TERM SURVIVOR of HIV for those living with HIV and became life- and I am also 30 years of age,” says long friends are no longer able to go to TRANISHA ARZAH, a writer and activist. dinner or socialize together. Fortunately, “That may be odd to hear for some, but all three say that online is where they’ve it’s actually nothing new. We were just found long-term survivors of their gen- the children, the grandchildren, and the eration connecting, even before the kids who needed blood transfusions [or isolation of the COVID-19 stay-at-home in Granados’ case, her mom]. orders. “Long-term survivors are defined as Arzah is emphatic: “We hope to have having an HIV/AIDS diagnosis before our space one day where we can recon- 1996. They share those earliest and nect or connect for the first time as long- darkest years of the epidemic when term survivors born with HIV or acquired there were no effective treatments. We HIV at childhood age, just as our fellow were there too,” says Arzah. “We went long-term survivors have had in the past.” through those dark ages along with the As people reach out for connection world, but we just didn’t have a platform one way or another, in HIV, the idea that or a voice yet.” “aging” represents a certain age seems to remain. Thankfully, that is changing. CAMERON SIEMERS, 39, was diagnosed “The Reunion Project has long sup- with HIV at age seven from a blood fac- ported and been inclusive of people born tor he received to treat his hemophilia at with HIV as long-term survivors,” says

DAVID FRANCO age three. “It’s not like young survivors Matt Sharp, co-founder of the national

POSITIVELYAWARE.COM/SUBSCRIBE | MAY+JUNE 2021 21 to me; is it happening to you too? Because I don’t know what this is. Because we’re not getting back to normal in the near future. But we can do those things online.” “Where I see the lack of representa- tion right now is in research, but also in just supporting one another and being able to create spaces where we can con- nect socially and get emotional support,” Granados says. “I feel like that continues to be a need, although we really have taken it into our own hands. Folks have really started to connect on their own through social media.”

BOTH GRANADOS AND CARSON expressed concern about research in young long-term survivors. “It’s interesting to look at people I know who were born with HIV or sero- converted when they were very young and see the same effects and the same medical issues as a lot of the people who are older, in their 50s and early 60s, or who have had HIV for 20 or 30 years,” says Carson. “They’re having a lot of the same symptoms and syndromes. Medical issues and issues with drug adherence. Drug access, because a lot of the medi- cations don’t work anymore. They really got tested on, because they didn’t have pediatric formulas. A lot of people I know are on their last-chance drugs at this point. What does that mean for the next ‘I am a long-term survivor of HIV and I am also 30 years of age. 35, 40 years of their lives? There’s early That may be odd to hear for some, but it’s actually nothing new.’ onset dementia. I’ve seen it in my friends. Tranisha Arzah And they’ve seen it within themselves.” “Right now, when I’m hearing a lot of the information about how HIV impacts network of long-term survivors of HIV. of feeling isolated, but it may just look folks who are aging, it’s just so vague, While there is currently no young long- different. Of course, we’re different because I’m aging too,” says Granados. term survivor on the network’s expanded generations, but it’s so important that “I’ve been living with HIV just as long. So steering committee, it remains a priority different generations listen to each other, that’s what I’m curious about. In terms to include them in leading their efforts because we have so much to learn from of issues that come up, does it have going forward. each other and to connect over. At the to do with age or because we’ve been Granados agrees that advocacy same time, it is important for us and the living with HIV so long and have been efforts and events aimed at long-term public to witness our different lenses as on medication this whole time and all of survivors are increasingly recognizing long-term survivors of HIV.” that. But there doesn’t seem to be too younger people. At the same time, she many answers about what I should be sees younger people speaking up more EMILY CARSON, 36, became interested expecting at my age even now.” for themselves. in HIV advocacy at the age of 12 when Granados, who holds a master’s “Over the past few years there’s been a friend at school was mistreated for degree in social work, continues an increase in inclusion,” says Granados. having the virus. She began volunteering working during the pandemic at the “I think also that just like my peers have with Y+, an international organization Children’s Hospital in Los Angeles. As gotten older, they have gotten more working on behalf of young people living HIV Prevention Manager for the hospi- vocal. I see us represented a little bit with HIV. tal, she hasn’t worked at home during more, at least socially, when people are “When the focus 10 years ago moved COVID-19 because her clinic remained talking about long-term survivors. to aging with HIV, when we hit that open. Arzah works full-time with the “But it’s still not like the go-to. It’s not 30-year mark in the epidemic, it was real- Louisiana SPCA and contributes writing what people immediately think about. ly clear that young long-term survivors from her home in New Orleans. Carson, But I do feel like the community of long- weren’t being a part of that conversa- who grew up in the states, mostly New term survivors is starting to be more tion,” she says. York, and struggles with a genetic condi- aware and more inclusive of us. Which “Advocate for yourself. And advocate tion, works at Uplift Kitchen in Toronto, makes me happy,” she says. for your friends,” Carson advises. “A lot helping to counter food insecurity. “Oftentimes we’re left out of the aging of the social groups, and the art therapy Siemers hasn’t been as lucky. He with HIV community, but yes, we’re groups, and the having-dinner-together had to leave his job in health care. He aging too,” Arzah notes. “We share simi- and getting together and sharing needs had a kidney transplant five years ago. lar health complications and experiences to continue. This weird thing is happening Although he felt immediately better after

22 MAY+JUNE 2021 | POSITIVELYAWARE.COM/SUBSCRIBE ‘I see us represented a little bit more, at least socially, when people are talking about long-term survivors.’ Grissel Granados

receiving his mother’s kidney, he spent well, and all my friends from back in our “We give them money for a project three years on dialysis, a grueling pro- youth, with the treatments—it’s doing a they can do in the community that helps cess for someone as small and thin as lot of good. But it’s still a concern, even them and somebody else. We give them he is. It also took a long time to find him- now, because we’ve been infected so something that they can do beyond self at the University of California Los long that we have so many different their life expectancy. I didn’t know what Angeles (UCLA), with many resources problems from the disease, we don’t to do because I really wasn’t planning and where experts could take care of his know if something’s going to come up on a future. I just pretty much lived day hemophilia, HIV, and heart disease, and and, you know, make us sick again.” by day. And when things like the future perform his transplant. “All that’s taken Siemers continues to speak out about come up, a lot of people in my position a toll,” he says. “It’s the effects of being HIV publicly when he can. “I’ve had very are confused. sick so long, and trying to find a normal- rare experiences where I’ve had to deal “One girl went to Africa, through a cy in life that’s difficult to do. I think a with people acting ugly towards me. nursing program in her church, and lived lot of people I know who are growing up And people have no idea about HIV and in a village, and helped out a clinic near- with HIV are just trying to be normal.” AIDS. They think it’s still a death sen- by. She is amazing. Our applicants come All four say they’ve lost friends, first tence. They think you can get it through up with incredible ideas. That’s my favor- in childhood, and then childhood friends touching. It’s really weird to hear at this ite part, meeting them and hearing what and newer friends later in life. Like time. And I live in California, which is they have to say and what they want to Granados, who also grew up in Southern like, the most liberal state in the country, do,” he says. “What do we do for a life we California, Siemers made lifelong friends and there is so much misinformation, or weren’t supposed to have? So we try to at Camp Laurel for kids with HIV, and at lack of information, about HIV and AIDS. provide a little support for that.” Dream Street Camp, for children with And having that stigma, when you do Arzah continues to blog. We’re Still physical disabilities. feel it, is one of the worst feelings ever, Here from Granados has definitely left its “One of the kids who I knew since he that people won’t even come near you or mark, and Siemers is looking to produce was 13, we were actually in the same touch you.” a podcast with friends, including fun hospital at the same time, and had Siemers has a super power in a non- things in the mix. the exact same thing wrong with us,” profit he started in 2008, raising money Many long-term survivors had a life Siermers says. “We shared a room and for “life grants” for young people with before HIV. They didn’t. he … he passed away. And back then, life-threatening illnesses to help them They’re still here. when I was around 20 or 21, to see some- achieve a dream job. Some are still con- body I know and saw grow up, it was tributing to the work they began more GO TO cameronsiemers.org for more about

COURTESY OF TRANISHA ARZAH AND GRISSEL GRANADOS GRISSEL AND ARZAH TRANISHA OF COURTESY jarring for me. As of now, I’m doing really than 10 years ago. his foundation.

POSITIVELYAWARE.COM/SUBSCRIBE | MAY+JUNE 2021 23 CONFERENCE UPDATE VIRTUAL CROI 2021 First HIV and now COVID-19 A look at the past and the future The president of the largest historically Black academic health center lays out the pandemic’s effects on different populations COMPILED BY ENID VÁZQUEZ

In this year, the 40th anniversary of the CDC’s report of unusual immune deficiency “So, it is not a surprise that African found among young gay men, eventually leading to the discovery of HIV, CROI examined Americans and Hispanics, who have all the COVID-19 pandemic in relation to the AIDS epidemic. James E.K. Hildreth, PhD, MD, of these major conditions at a much President of Meharry Medical College, in Nashville, the nation’s largest private, inde- higher rate than whites, have borne pendent, historically Black academic health center, was invited to speak to the history of a disproportionate burden of severe HIV and SARS (severe acute respiratory syndrome) and their unequal impact on specific COVID-19 disease and death. groups of people. Dr. Hildreth began his plenary talk, “Disparities in Health: From HIV to “In data from late summer last year COVID-19 and Beyond,” with that CDC report, and how the fact that only gay men were from just four states—Michigan (mostly affected created an atmosphere of discrimination. It was a discrimination that quickly Detroit), Illinois (mostly Chicago), North encompassed other oppressed groups. Carolina, and Louisiana (mostly New Orleans)—the differential rate of deaths “It’s important to know that many “In December 2019, officials in China between Blacks and whites per 100,000 elected officials, from the president to reported dozens of cases of pneumonia individuals was almost ten-fold in senators to elected representatives in of unknown cause. In early January they Michigan and five-fold in Louisiana. [The Congress, really treated this problem identified a novel coronavirus. On January rate for Blacks in Illinois was 7.2 and 1.3 with outright disdain because of the 19, 2020, the first case was reported out- for whites; in North Carolina, it was 0.6 strong association with being gay at the side of China, in Thailand. On January 30, for Blacks and 0.4 for whites.] time,” Dr. Hildreth said. But, “by the late the World Health Organization, W.H.O., “These numbers and these statistics ’80s and early ’90s, an interesting thing reported it to be a public health emer- are quite alarming. And this has been occurred when the majority of cases gency of international concern. Quite consistent throughout this crisis. I diagnosed in Stage 3 AIDS were among honestly, it should have been declared a should say even today there are counties African Americans and Hispanics. pandemic at that time. And then March, in the country where the differential rate “You can actually see that for the as we approach the first anniversary, of death from COVID-19 is at least six- decade from 1985 to 1995, there was W.H.O. declared it an outright pandemic. fold in some instances. a steady decline in whites who were “In China, an observation was made “So, it’s not an exaggeration to say diagnosed with AIDS. The situation for pretty early on that in a racially homog- that COVID-19 has been devastating for African Americans was just the oppo- enous nation of over a billion people, people of color. site. There was a steady increase in the seven out of 10 of those persons who “If you look at the two pandemics percent of African Americans who were died from COVID-19 shared something spaced 40 years apart, both HIV and representing the AIDS cases, and those in common. They all had a co-existing SARS reveal a deep chasm in the health two lines crossed. [Cases among African comorbid condition: hypertension, dia- status between African Americans and Americans continued to increase as the betes, ischemic heart disease, chronic Hispanics and Caucasians. Both of these cases among whites continued to drop.] lung diseases. They’d had a stroke, or were also highlighted by failed national “And even though antiretrovirals were suffered from congestive heart failure. leadership because of politics and preju- available, there continued to be more “So, it’s not a surprise that here in the dice that delayed the response to these and more diagnosed cases of AIDS United States, the burden of disease and pandemics, but also made for an ineffec- in African Americans because they death from COVID-19 has been borne tive national response early on. And the often came in late to care. And by the by Black and Brown people, because longstanding disparities in chronic diseas- time they arrived for health care, their all of those underlying conditions that es are major contributors to the dispro- immune system had been destroyed, made persons in China subject to severe portionate impact of both of these viruses and there was not much that could be disease and death are disproportionately on disadvantaged communities. In order done for them. Even as late as two years present in minority communities. Half of to understand the inequities revealed by ago, 2018, we still see that for the most African Americans or thereabout have HIV/AIDS and COVID-19, they are best part, African Americans especially, and some cardiovascular disease. A third, understood in the context of what is Hispanic men who have sex with men, almost half, of them have hypertension. called ‘social determinants of health.’ account for more than half of all the new The overall rate of hypertension in the “The W.H.O. definition of social deter- HIV infections here in the United States. United States is 33%, but among African minants of health [SDOH] is ‘the con- “So, for almost the whole time we’ve Americans it’s much higher than that. ditions in which people are born, grow, known about HIV/AIDS, it’s been a prob- For Blacks and Hispanics also there’s a live, work, and age. SDOH are shaped lem of African Americans and people of huge proportion of these individuals who by the distribution of money, power, and color around the world and here in the are obese, and obesity has turned out to resources throughout local communities, United States. Again, more than half of be a major determining factor for severe nations, and the world.’ all the new cases occur among gay and disease and death from COVID-19. And “There are five major categories. First, bisexual men. of course, diabetes as well. education, or the quality of education,

24 MAY+JUNE 2021 | POSITIVELYAWARE.COM/SUBSCRIBE and access to it. Then health care to both of these pandemics is access also people of color in poor communities. quality and access to it, and the built to health care and the quality of health “We should have taken a more environment and nature of the neighbor- care. And also the numbers of African focused approach that recognized that hoods we live in. There’s also social and Americans and Hispanics who are part the challenge in dealing with COVID-19 community context, and of course our of the healthcare system, especially as was not the same across the board for economic status. physicians. Between 1908 and 2008, the the whole population. So, the population “The education status is important in percentage of Black physicians in the approach was contributing to the inequi- this context because access to health United States never got to be more than ties in outcomes of COVID-19. Achieving information is also limited when there’s 2.5%. It was only in 2008 that that num- health equity does not mean equality limited access to quality education and ber began to climb. And it still sits just in what we do for our communities. It educational institutions. I mentioned under 5%. So, just under 5% of physi- means customizing our approaches to before one of the main concerns for cians in the United States are Black even meet the needs of those communities HIV and the fact that so many African though African Americans represent and individuals who live there. Americans were being diagnosed with 13% of the population. “So, two pandemics—HIV/AIDS and late-stage disease is that oftentimes “There are a number of factors related COVID-19—40 years apart, reveal a these individuals came into care very to this. One of them has to do with pipe- wide gap in health status in minorities late, after the virus had decimated their lines. Not enough individuals, especially compared to whites in the United States. immune systems. Black males, make it through college Truthfully, this gap is longstanding, and “Another aspect of COVID-19 is that prepared to go to medical school. And is best understood in the context of the many of these individuals have poorly that relates to what happens in high social determinants of health. Our goal

‘...health equity does not mean we need equality in health care. What we need to do is make sure that each person has their needs met and each community has their particular needs met.’ managed chronic conditions, like hyper- school. A lot of individuals do not make it should be for each person to achieve their tension and asthma, because they don’t through high school, so they don’t have best personal health and wellness. That have access to quality health care or the opportunity to go to college in the means recognizing and meeting individ- many of them don’t have a primary care first place. That observation is also true ual needs and community needs, and physician. So access to health care and for Hispanics. That number is just under knowing that the same approach would the quality of health care is a major social 6% of the physicians in this country even not work for all. Closing the health gap determinant of health that has been though they represent about 20% of the here in this country, revealed by these revealed by both of these pandemics. overall population. two pandemics, is going to require coordi- “As just one example of the neighbor- “The disparity in access to health care nated efforts across a range of organiza- hood and the built environment, which is exacerbated by the fact that so few tions, not just health care itself. Because could also apply to the social context, physicians are physicians of color. There again, health care only accounts for about many individuals who have been really are many data to demonstrate that the 10 to 15% of the overall health of an stricken by COVID-19 live in multigener- outcomes for minority communities and individual. The rest of it is determined by ational households where the virus can having access to primary care providers social conditions and behaviors.” spread very quickly, especially when would be greatly enhanced if there were “So we’re going to need a coordinated there are grandparents and older indi- more physicians of color to take care of effort for over an extended period of viduals living in those households. That’s their communities. This is a really chal- time from national agencies and orga- been a major contributor to the COVID- lenging problem that we need to find a nizations, businesses, and agencies to 19 challenge. way to deal with. solve this problem. “Also, as just one example of deaths “I want to make the point that transi- “I would also say that I hope that related to both HIV and COVID-19, is tioning to health equity does not mean both of these pandemics make it clear mass incarceration, which is a big prob- we need equality in health care. What that what we need to do in this country lem in this country for huge numbers, we need to do is make sure that each to make sure that this does not hap- especially Black males, who have been person has their needs met and each pen again is to take a more focused incarcerated from an early age. That community has their particular needs approach the next time we deal with a congregate setting has proven to be met. Our goal should be for each person public health crisis like this, because it devastating for the spread of COVID-19. to achieve their personal best health and would result in many more lives being Many of the deaths that have happened wellness. Not every solution would be saved and less resources being needed here in the United States from COVID-19 the appropriate one for all people. to deal with it.” have been because so many people have “A great example of this is that the been incarcerated and the prisons were approach the United States took to Dr. James Hildreth not tested quickly early on for the virus. dealing with COVID-19 was basically a serves as Associate And also for HIV, mass incarceration also population approach that assumed that Director of the created some social networks that made the risk of COVID-19 was the same for all Tennessee Center it quite easy for the virus to spread in of the people in our country. That was for AIDS Research Black communities. So, this social con- clearly not the case. (CFAR) and was text and community context are really “There are vulnerable populations that appointed to important social determinants of health we knew about from the beginning— President Biden’s as related to the two pandemics. older individuals, people living in nursing COVID-19 Health “One of the other factors that relate homes and assisted living facilities, and Equity Task Force.

POSITIVELYAWARE.COM/SUBSCRIBE | MAY+JUNE 2021 25 CONFERENCE UPDATE VIRTUAL CROI 2021 Vaccine nationalism is killing us How inequities in research and access to SARS-CoV-2 vaccines will perpetuate the pandemic BY JEFF BERRY

his year’s Martin Delaney presentation, usually one high school in 1981, recalled that of the highlights of the conference and part of the young it took then-President Ronald investigators pre-meeting, was for the first time highlight- Reagan seven years to say the ed in the CROI opening plenary. As Jim Pickett of AIDS word “AIDS” during his time in Foundation Chicago stated in his introduction, “We could not office. “As Larry Kramer said back be more thrilled at this opportunity to feature the voices of then, AIDS was about disposable community and activism during this opening plenary of virtu- people, people who didn’t mat- al CROI 2021, something unusual for CROI that’s something I ter. They were gay men, they’re hope we carry forward.” Gregg Gonsalves, a 2018 MacArthur people who use drugs, they’re Fellow, co-founder of Treatment Action Group and an assis- people who are engaged in sex tant professor at Yale School of Public Health, and Fatima Hassan, a work, they’re people of color South African human rights lawyer and social justice activist, and across the United States. These Tfounder of the Health Justice Initiative, had a sobering and timely dis- were disposable people who cussion about how vaccine nationalism is impeding access to COVID- really didn’t merit a full-scale 19 vaccines in developing countries around the globe, and what needs research-prevention-treatment to be done to ensure equitable access. enterprise by the largest country on earth. And millions of people Vaccine nationalism is “hedg- the SARS-CoV-2 virus for the fore- around the world suffered from ing your bets, where you’re trying seeable future. “If you vaccinate those early decisions, which to get supply from... many differ- one quarter of the population, and delayed the fight against AIDS ent sources, with the result that you leave the other unvaccinated, many, many years ago. Now, for many countries, over 130 coun- it just needs variants to spread.” many of us, if you fast forward tries in the global South, have very They also discussed the similar- to the current moment, we see limited access to vaccines,” noted ities and differences between the another set of disposable people Hassan. Gonsalves pointed out HIV/AIDS pandemic and COVID-19. in the United States, the impact

that we will be chasing variants of Gonsalves, who graduated from of COVID-19 among communities OONAL-ISTOCK

26 MAY+JUNE 2021 | POSITIVELYAWARE.COM/SUBSCRIBE ‘...philanthropy will not buy you equality’ …All of these institutions that are meant to actually be scaling up supplies, need to act with a bit more force and a bit more pressure, not just a moral pressure.

of color in the United States, it’s that are meant to actually be infectious diseases left just horrifying when you compare scaling up supplies, need to act unchecked,” says Gonsalves. it with their European American with a bit more force and a bit “That was the lesson of the AIDS counterparts.” more pressure, not just a moral epidemic, but we all learned too There is reason for hope, pressure. But they also need to late to avoid a global catastrophe. however. “The scientists and now insist on certain minimum We’re pleading, pleading with the clinicians…who supported us, norms and standards, because if attendees at CROI, to be activists during the HIV/AIDS years, did two this is the way we’re dealing with with us again. Maybe you can’t important things,” says Hassan. this pandemic, which we thought march, but you can get on the “They contributed to scientific would be different after the HIV/ phones, you can email, you can knowledge, which they [are] doing AIDS pandemic, then what hap- get on social media and ask for a right now. But secondly, they call it pens with the next pandemic? It people’s vaccine, so that we have out. They call the nationalism out, means we’ll never get to a system access everywhere for everyone.” they call governments out, they where we actually have equitable call pharmaceutical companies health and where we actually VIEW the entire presentation out, and they insisted that there decolonize public health.” on YouTube: youtube.com/ be equitable access where public “We know what happens to watch?v=2zYxBQHQbq8. health is prioritized. And many of those scientists and clinicians are actually at the forefront of COVID- 19 research in South Africa and in other parts of the world as well. And so we look to them again, for the leadership, for them to be the compass, to shine…a spotlight on the issues of inequity in relation to vaccine access for COVID-19.” One potential solution is what’s referred to as the TRIPS waiver. According to Médecins Sans Frontières (MSF), “enabled by IP [intellectual property] monopolies, corporations continue to pursue secretive and limited commercial deals that exclude many low-and middle-income countries, even in the midst of the pandemic. The waiver proposal could help by removing legal uncertainties and risks for potential producers and governments to quickly start pre- paring to scale up production and supply of treatments, vaccines, and other essential medical tools.” Other solutions were touched upon, including the transfer of technology, and collaboration between governments, pharma- ceutical companies, and global entities such as WHO, COVAX (COVID-19 Vaccines Global Access), and Gavi, The Vaccine Alliance. “We cannot wait for volunteer- ism, and for benevolence and for charity,” says Hassan. “Somebody a few weeks ago said it quite clear- ly—‘philanthropy will not buy you

©LUCIO PATONE-UNSPLASH equality’…All of these institutions

POSITIVELYAWARE.COM/SUBSCRIBE | MAY+JUNE 2021 27 LOWER YOUR VIRAL LOAD. AND MAKE UNDETECTABLE * A POSSIBILITY AGAIN. * Undetectable viral load is defined as fewer than 50 copies of HIV per mL of blood. Ask your healthcare provider about TROGARZO® – A fully active HIV-1 treatment designed specifically for those with treatment failures For more information, visit TROGARZO.com

WHAT IS TROGARZO®? your healthcare provider or nurse, or get • Pregnant or plan to become pregnant. It TROGARZO® (ibalizumab-uiyk) is a medical help right away if you get any of is not known if TROGARZO® may harm prescription medicine that is used with other the following symptoms of an allergic your unborn baby. Tell your healthcare antiretroviral medicines to treat Human reaction: trouble breathing, swelling in provider if you become pregnant during Immunodeficiency Virus-1 (HIV-1) infection your throat, wheezing, chest pain, chest treatment with TROGARZO®. in adults who: tightness, cough, hot flush, nausea or • Breastfeeding or plan to breastfeed. You • have received anti-HIV-1 regimens in the vomiting. should not breastfeed if you have HIV-1 past, and • Changes in your immune system (Immune because of the risk of passing HIV-1 to • have HIV-1 virus that is resistant to Reconstitution Inflammatory Syndrome) your baby. Do not breastfeed if you are antiretroviral medicines, and can happen when you start taking HIV-1 receiving TROGARZO® as it is not known • who are failing their current antiretroviral medicines. Your immune system might if TROGARZO® passes into breast milk. therapy get stronger and begin to fight infections Talk with your healthcare provider about It is not known if TROGARZO® is safe and that have been hidden in your body for a the best way to feed your baby during effective in children. long time. Tell your health care provider treatment with TROGARZO®. right away if you start having new Also tell your healthcare provider about all IMPORTANT SAFETY INFORMATION symptoms after receiving TROGARZO®. the medicines you take, including all Do not receive TROGARZO® if you have had The most common side effects of prescription and over-the-counter an allergic reaction to TROGARZO® or any TROGARZO® include diarrhea, dizziness, medicines, vitamins, and herbal supplements. of the ingredients in TROGARZO®. nausea, and rash. These are not all the For more information or medical advice possible side effects of TROGARZO®. TROGARZO® can cause serious side effects, about side effects, ask your healthcare including: Before you receive TROGARZO® provider. You may report side effects to the • Allergic reactions. TROGARZO® can cause (ibalizumab-uiyk), tell your healthcare FDA at 1-800-FDA-1088 or the THERA allergic reactions, including serious provider about all of your medical patient support® program at 1-833-238-4372. reactions, during and after infusion. Tell conditions, including if you are:

TROGARZO® is a registered trademark of TaiMed Biologics Inc., under license to Theratechnologies Inc. © 2020 Theratechnologies Inc. All rights reserved. 555-02-10/20 CONFERENCE UPDATE VIRTUAL CROI 2021 Some take-home messages from CROI BY ENID VÁZQUEZ achieve undetectable viral load (less than 50 copies). These individuals had exten- sive drug resistance. People can’t take LEN alone, but need to use other HIV drugs as part of their treatment regimen. Findings are from Phase 2/3 results in the CAPELLA study. See Briefly.

THRIVE: Decreasing HIV in men of color The THRIVE demonstration project funded seven health departments to establish community collaboratives providing HIV prevention and care services for MSM of color (including the promotion of testing and PrEP). Comparing these jurisdictions with others Is COVID-19 hospitalization Truvada has been recom- to the HIV integrase inhibitor not funded, THRIVE found more common among peo- mended as an alternative to drug class, of which cabote- significant decreases in new ple living with HIV (PLHIV)? daily PrEP for MSM (men who gravir is one. With more than HIV diagnoses for the Black No. However, most studies have sex with men) by guide- 4,000 people in the study and White MSM in funded have found a greater risk of lines from the International (half on the comparator PrEP jurisdictions, but not for severe COVID-19 complica- AIDS Society-USA, the medication Truvada), the Latinos. Only White MSM had tions among PLWH, but this European AIDS Clinical prevention rate shown was decreases in unfunded areas. was dependent upon age and Society (EACS), and the tremendously effective. THRIVE is funded by the U.S. comorbidities (co-existing World Health Organization, Centers for Disease Control conditions and illnesses such “but has not been endorsed Cabenuva (CAB LA) was just and Prevention (CDC). (See as diabetes)—the usual sus- yet by CDC due to limited as good when taken every Abstract 106.) pects for the new pandemic. real-world experience.” 8 weeks as it was when Still, different groups of taken every 4 weeks, accord- Gender-affirming researchers saw contradic- Non-Hispanic Black, Hispanic, ing to the ATLAS-2M study. surgery and HIV tory findings when looking and non-Hispanic Asian This was at nearly four years The title from New York at COVID-19 in PLWH. It’s a patients with HIV were more of clinical study with the City’s Department of Health matter of the different com- likely to contract COVID-19 new injectable HIV drug and Mental Hygiene and parisons used, which become compared to non-Hispanic on the market, with more Callen-Lorde Community apples to oranges across White patients,” according than 1,000 participants. Health Center says it all: studies. For example, some to the U.S. National COVID Tolerability was good, and it “Gender-affirming surgeries report a higher rate of death Cohort Collaborative. was similar between the two accessed through Medicaid due to COVID-19 in PLWH groups. See Briefly. (ATLAS are associated with high and while others don’t. “The Standard HIV testing stands for “Antiretroviral sustained viral suppression Effect of HIV on COVID, Effect may not be good enough Therapy as Long-Acting among transgender people of COVID on HIV” symposium to find an infection in Suppression,” and 2M refers with HIV in New York City, featured four speakers from someone using long-acting to two months.) 2013-2017.” The report from around the world. cabotegravir (CAB LA) for lead researcher Cristina PrEP (which is still in clinical In PLWH with lots of HIV Rodriguez-Hart, PhD, MPH, Vive la France—again. research). And four partic- medications under their from the health department, On-demand PrEP with ipants who acquired HIV belt (heavily treatment-ex- and the study team noted Truvada was just as good as still had on-time monthly perienced), control over that transgender people living taking the HIV prevention injections and sufficient their virus was found with with HIV “have indicated that pill every day, first for one drug concentration in their a long-acting drug still in gender-affirming and non-dis- year in a previous report and blood to prevent the virus, development, lenacapavir criminatory healthcare was now with updated results out of 12 infections found (LEN). With just two injec- their top health concern” and out to three years, according after approximately two and tions in half a year (adminis- that “mental health outcomes to the ANRS Prevenir study a half years on CAB LA in the tered once every six months), have improved over time after out of France. ANRS noted HPTN 083 study. Some of the 19 out of 26 individuals in accessing gender-affirming

COURTESY OF VIRTUAL CROI VIRTUAL OF COURTESY that on-demand PrEP with 12 individuals had resistance the study (73%) were able to surgery.” (See Abstract 107.)

POSITIVELYAWARE.COM/SUBSCRIBE | MAY+JUNE 2021 29 CONFERENCE UPDATE VIRTUAL CROI 2021 Pregnancy update plus HIV therapy for children

transmission in this mortality rate); neonatal out- circumstance is still comes were favorable.” possible. The study team from Women had Stallenbosch University were fewer adverse in a good position to note events with dolute- differences in COVID-19 in gravir than with pregnant women. Most of efavirenz. them are clinicians working in a high-risk pregnancy More dolutegravir clinic outside of Capetown, in pregnancy at Tygerberg Hospital in Tygerberg, South Africa. The IMPAACT The women were tested study also report- for SARS-CoV-2 infection only ed good results when they had symptoms. with dolutegravir One hundred pregnant vs. efavirenz for women had COVID-19, and 28 new mothers and of them were also living with infants. Previously HIV. This was in line with the it reported similar number of women in the clin- good results with ic living with HIV overall, 24%. DTG vs. efavirenz The women living with in pregnancy. Now it report- HIV, however, had it well A round-up of CROI reports ed 50-week post-partum controlled. Most of them, 27, BY ENID VÁZQUEZ data showing that safety were on anti-HIV therapy. remained similar for all the Nineteen had undetectable GO TO croiconference.org to read the abstracts and watch women and infants. For the viral load (73%). Half of them video presentations. moms, undetectable viral had a CD4 count above 441 load results remained similar- (with a range from 14–838). Dolutegravir in pregnancy groups out to 72 weeks post- ly high. (Abstract 177) The study team collected partum (116 of 125 women COVID-19 data from May 1 Once again, dolutegravir was on dolutegravir vs. 114 of 125 COVID-19 in positive to July 31, 2020. They went shown to be safe and effec- women on efavirenz). pregnant women on to collect pregnancy tive for pregnant women The research team noted and birth outcomes out to and their infants. that the study results support For women with a high-risk October 31, 2020. Previously, the DolPHIN-1 World Health Organization pregnancy—complicated by Most of the COVID-19 study found that for preg- (WHO) recommendations conditions such as diabetes, infections were diagnosed in nant women, dolutegravir for using dolutegravir at all obesity, HIV, or high blood the 3rd trimester (81%). Half decreased viral load faster stages of pregnancy as well pressure—COVID-19 was than efavirenz did in the first as conception. The HIV peri- not more dangerous for the 26 weeks of treatment. natal treatment guidelines women who were living Now, the DolPHIN-2 study of the U.S. Department of with HIV. (Abstract 175) reported on Health and Human Services “No significant differenc- what happens when preg- (DHHS) also support dolute- es for COVID-19 infection nant women start antiviral gravir for conception and impact and outcome were treatment late in pregnancy, pregnancy. noted for [pregnant women in their third trimester. There were three infant living with HIV] versus those Half of the women transmissions in utero for the without HIV,” reported a on dolutegravir achieved dolutegravir group compared group of South African clini- undetectable viral load in to one in the efavirenz group, cians and researchers (See around four weeks, while it which occurred postpartum Abstract 171.). took about 12 weeks for half to the baby of a breastfeed- But the positive women, the women on efavirenz to ing mom. Both dolutegravir the team noted, were on HIV reach undetectable. This is and efavirenz were effective treatment and had undetect- a huge difference, especially in preventing postpartum able viral load. for pregnancy, where time is transmission in breastfeed- COVID-19, however, hit 7X greater risk of infant HIV of the essence for the infant, ing (this was one of the goals the women hard. if anti-HIV drugs are delayed not just the patient carrying of the study, for mothers According to the report, until the third trimester rather that baby. who chose to breastfeed). “The impact of COVID-19 than started during the Undetectable viral The one infection observed infection in pregnancy was first or second trimester of pregnancy. load (less than 50 copies) despite adequate drug levels severe (40% complicated WORLD HEALTH ORGANIZATION,

remained strong for both in the mother shows that by pneumonia; 8% crude REPORTED BY DOLPHIN-2 ISTOCK

30 MAY+JUNE 2021 | POSITIVELYAWARE.COM/SUBSCRIBE HILLIER COURTESY OF UNIVERSITY OF PITTSBURGH ARDS and one from advanced and one fromARDS advanced (including of twins), 5sets 5 [antiretroviral therapy].” Certainly many women pro many women Certainly Many in of work who the us HIV with bacteremia. withHIV bacteremia. Eight women died, seven from Dolutegravir (DTG)Dolutegravir more was Research Institute, said, “The Institute, “The said, Research Pittsburgh Center Medical Hillier, of of University the feel women ought to be able ought able women to be feel COVID COVID trials. from tion, Dr. Hillier “We said, tion and many non-providers have pregnant are who viders to decide for themselves. women’s really space health merited. highly is women invaccination pregnant excluded were who women were unknown. The new unknown.were The vaccinated against COVID-19. against vaccinated of option being the women give shouldthey at least study, the presented who very bad for pregnant women, women, pregnant for bad very in two weeks of the diagnosis. of diagnosis. the weeks in two included 91included live births h ha borns did well, died borns one but pregnant, and 1 medical ter 1medical and pregnant, pneumonia; 13 developed pneumonia; 13 developed but is not influenced by ART ART by is not influenced but line is COVID-19bottom is generate data ingenerate pregnant mination of pregnancy. Birth while died who stillmothers required invasiverequired ventilation. adult respiratory distress distress adult respiratory dard-of-care medications, dard-of-care and the Magee-Women’s e of the women delivered with- delivered of women the o effective at decreasing viral viral decreasing at effective obstetrician gynecologist gynecologist obstetrician load in childrenload stan than to other meds for children for meds other to s stillbirths, 4 miscarriages, 2 4miscarriages, stillbirths, syndrome (ARDS); syndrome six and said the clinician the said feels team Dolutegravir superior hortly after birth. after hortly lected to receive vaccina to receive lected utcomes for two women women two for utcomes eard about the need to need the about eard ve elected vaccination.” elected ve With regard to vaccina regard With CROI co-chair Sharon Sharon CROI co-chair F Pregnancy outcomes outcomes Pregnancy Liesl De Waard, De MD, an Liesl orty women developed women developed orty

------“There were no safety con safety no were “There Turkova did also They said. ART for children for [weighingART 14 first time first (treatment-naïve)or University College London, College University [400 viral load or higher] or load viral [400 Clinical Trials Unit at Trials at Unit Clinical She noted that noted inShe U.K., the Medical Research Council Council Research Medical PENTA-29 Trial. H y ferred drug for children. for drug ferred therapy. the for medication HIV taking which and efavirenz included the study results “support an an “support results study the trolled trial in trial trolled children for weeks (oneweeks year) that contin t which recommend DTG- which recommend which may be better for for which better may be ing first- or second-line ART, ingsecond-line first-or increases seen with dolute seen increases ing less than 31 than are pounds ing less protease inhibitors. inhibitors. protease presented the study findings study the presented based regimens as preferred preferred as regimens based by 96 weeks in children/ weeks by 96 failure treatment on based gravir in adults. in gravir randomized, placebo-con roviral therapy] was superior therapy]roviral superior was not have weight the gain reported (Abstract 174). (Abstract reported dolutegravir apre is already drop in their viral load at 48 atdrop in 48 load their viral a adolescents starting first- starting or adolescents adult programs.” treatment urgent call for dolutegravirurgent for call ued out to 144 weeks (three weeks to out 144 ued results “clearly demonstrat on behalf of ODYSSEY/ the behalf on or more kg (31 more or pounds)] start cardiovascular health, Dr. health, cardiovascular cerns on DTG. These results results DTG. on cerns These e ed dolutegravir was better.” was dolutegravir ed lipid profile withdolutegravir, switching to their second-line switching to their second-line scale-up in children.”scale-up s team second-line,” study the o SOC [standard-of-care] [standard-of-care] o SOC ears). They also had a better ears). abetter had also They upport WHO guidelines WHO upport xpected later this year. this later xpected llowing with harmonization IV therapy.IV Children were “ The study was the first first the was study The Anna Turkova,Anna MD, said Most of 707 the Most children C Dr. Turkova, of the Results in children weigh Dr. Turkova that the said DTG-based ART [antiret ART DTG-based hildren agreater had ------

- the results were consistent consistent were results the in the study were in Africa, in were in Africa, study the but some were in Thailand in were Thailand some but dard-of-care arm received received arm dard-of-care Most countries. the across e of children the in stan the Europe. Dr.or Turkova said favirenz for first-line for favirenz POSITIVELYAWARE.COM International Women’s Day with presenters. “We can generate those chats that that chats those generate can “We presenters. with ence halls, where hundreds of attendees mill around around mill attendees of hundreds where halls, ence looking at the research reported on posters and talking talking and posters on reported research the at looking address disparities as they relate to women everywhere.” towomen relate they as disparities address abstracts have COVID as part of the topic.” the of part as COVID have abstracts one, old the of top on pandemic new the with dealing at CROI COVID, and and perfect for someone working in women’s issues, as as women’s issues, in working for someone perfect Opportunistic Infections (CROI) struggled to stay on on tostay (CROI) struggled Infections Opportunistic day to remember the women in our lives and the need to to need the and lives our in women the toremember day reminds me how women have been disproportionately disproportionately been have women how me reminds does. she the job losses and economic loss. So today is also a good agood also is today So loss. economic and losses job the Hillier. Dr. said hallways,” those in happens what somewhat resemble science in this program. About half of our invited invited our of half About program. this in science COVID of ahuge footprint have “We Dr. Hillier. said alater toat listened tobe speakers by recorded symposia impacted by HIV. And we’re hearing that women have have women that hearing we’re HIV. And by impacted the place of the interactive poster sessions in confer- in sessions poster interactive the of place the submitted of 25% And content. COVID some have talks CROI. at toaprecedent led COVID-19 again, Once time. pandemic world-wide agrowing of face the in track in which conference attendees are already specialists. specialists. already are attendees conference which in instead. virtual going and Boston in been disproportionately impacted by COVID in terms of of terms in COVID by impacted disproportionately been before shutting down the event scheduled to take place place totake scheduled event the down shutting before LAST YEAR, LAST “Today is International Women’s Day,” “It noted. she International is “Today “We are in a unique time both with COVID and HIV,” and COVID with both time aunique in are “We Amen, sister. sister. Amen, This year, CROI organizers were old—and weary—hats weary—hats old—and were organizers CROI year, This The organizers created “Science Spotlights” to take totake Spotlights” “Science created organizers The Dr. Hillier made her remarks on Monday, March 8, 8, Monday, on March remarks her made Dr. Hillier the Conference on Retroviruses and and Retroviruses on Conference the HILLIER —ENID VÁZQUEZ - /SUBSCRIBE was to have a limited number of of number alimited tohave was University of Pittsburgh. “And Pittsburgh. of University we were planning the program program the planning we were lots of audience participation.” audience of lots allow would that sessions live so what we wanted every day day every wanted we what so fatigue,” its run March 7–10, along with 7–10, with March along run its that people would have Zoom Zoom have would people that basically a half-day event during during event ahalf-day basically Sharon Hillier, PhD “We were very aware when when aware very “We were Indeed, virtual CROI 2021 was was 2021 CROI virtual Indeed, Kaletra and 25% Norvir- and given Kaletra therapy while those on their on whiletherapy those boosted Reyataz). boosted regimen (the majority given given (theregimen majority a protease inhibitor-based second-line treatment had had treatment second-line said CROI co-chair co-chair CROI said | MAY+JUNE 2021 2021 |MAY+JUNE , of the the , of 31 CONFERENCE UPDATE VIRTUAL CROI 2021

Highlights from CROI’s Community HIV Cure Research Workshop

BY KARINE DUBÉ AND MICHAEL LOUELLA

COLLINS CARTER PETERSON ANTHONY-GONDA DROPULIĆ

he annual Community HIV Cure Research Workshop, sponsored by Treatment Action Group (TAG), many of the Martin Delaney Collaboratory CABs (community advisory boards), and other advocacy groups, went virtual again this year, breaking up into three sessions—two sessions before the 2021 Conference on Retroviruses and Opportunistic Infections, on March 4–5; and one session after on March 16. The work- shop sessions (available on YouTube) aim to foster dialogue between biomedical HIV cure researchers and community members in an effort to deepen understanding of the science behind the search for an HIV cure. Following are a few highlights.

TSimon Collins [i-base.info/about-us/i-base-staff/ live with the virus and decide to contribute to the simon-collins] provided an overview of HIV treatment search towards an HIV cure. Recounting his personal interruption studies in the time of COVID-19. Several journey, he discussed how he turned obstacles into research teams have halted HIV research activities in possibilities in his life, and this carries now to his HIV the last year. For trials that continued during the pan- cure research activism. Participating in an HIV cure demic, additional safeguards have been put in place to trial has given him clarity and more energy to dedicate ensure safety of trial participants. For example, some to community activism. He described his pleasant research teams have included COVID-19 directly as feeling of not having to take a pill every day and how part of the informed consent, modified exclusion cri- participating in research has helped him tear down teria to reduce COVID-19-related risks, and integrated HIV stigma and demystify clinical research. youtu.be/ SARS-CoV-2 testing and vaccination as part of the D7wiUlv5H2I trial schedule of events. The HIV cure research com- munity has responded rapidly to new changes due to Christopher Peterson, from the Fred Hutchinson COVID-19 while prioritizing participant safety. COVID- Cancer Research Center and the defeatHIV collabo- 19 has given scientists an opportunity to evaluate ratory (defeathiv.org), provided an overview of gene whether risks of HIV cure trials are justified and how therapy in HIV cure research. Gene therapy is the we can continue to mitigate risks. Several HIV cure treatment of a disease by introducing or changing a trials are expected to re-open in 2021–2022. gene within a cell that does not pass down to future youtu.be/NSWzGn6DtqU generations. For HIV, new genes may be used to defend uninfected cells from virus entry or help William B. Carter, the chair of the BEAT-HIV clear out infected cells. Dr. Peterson discussed how Collaboratory Community Advisory Board [beat-hiv. several gene therapy approaches are borrowed from org/community-outreach] provided the perspective of cancer, such as chimeric antigen receptor (CAR) T an HIV cure research trial participant. Carter spoke cells, that were approved in 2017 by the U.S. Food about the importance of giving a voice to people who and Drug Administration for the treatment of acute

32 MAY+JUNE 2021 | POSITIVELYAWARE.COM/SUBSCRIBE Highlights from CROI’s Community HIV Cure Research Workshop

McCUNE

McCUNE STEINKOHL SHARP CASTILLEJO BROWN

lymphoblastic leukemia. Several CAR T cell products scaled and implemented globally. A new HIV Cure are expected to be tested towards an HIV cure in the Africa Acceleration Partnership (HCAAP) [thelancet. coming years. com/journals/lanhiv/article/PIIS2352-3018(20)30232-0/ youtu.be/-J7aibsjuz0 fulltext] has also been created to propel innovations in this area. youtu.be/K4vDvblpj10 Kim Anthony-Gonda, MD, PhD, ASCP, and Boro Dropulić, PhD, MBA, from Lentigen Technology, Inc. Gary Steinkohl, Matt Sharp, and Adam Castillejo [lentigen.com/home], discussed progress in moving spoke movingly about the legacy of Timothy Ray duoCAR T cells to human testing. duoCAR T cells Brown, the first person cured of HIV who recently involve two chimeric antigen receptors—one to clear passed away from leukemia. Timothy is perhaps HIV-infected cells and the other to protect cells from the most famous example of a research participant HIV infection. duoCAR T cells have been highly effec- coming out from the anonymity designed to protect tive against global HIV subtypes and have shown to be participants. Known as “The Berlin Patient,” he shared superior to monoCAR T cells. Preclinical studies also his experiences with the world and advocated for cure support the safety and efficacy of duoCAR T cells in research. Each of these men has also come out as animal models. A first-in-human phase I/II study is a cure research participant like Timothy; what they being planned to evaluate the safety and efficacy of shared about their motivations, which range from sur- duoCAR T cells in 18 ART-suppressed people living vival to hope for future generations, was thoughtful with HIV at the University of California, San Francisco and poignant. youtu.be/vB6FKJShvFI (UCSF) [bit.ly/UCSFduoCARtcellstudy]. Relatedly, an organization called Caring Cross [caringcross.org] is FOR MORE INFORMATION: working to make gene therapy more globally acces- Treatment Action Group’s Pre- and Post-CROI sible to resource-limited parts of the world. youtu.be/ Community HIV Cure Research Workshop (2021): UfYDThaVBqU treatmentactiongroup.org/webinar/pre-and-post-croi- community-hiv-cure-research-workshop Mike McCune, MD, PhD [profiles.ucsf.edu/mike. mccune], from the Bill and Melinda Gates Foundation, Karine Dubé is an assistant professor at the Gillings discussed bringing safe, effective, and accessible School of Global Public Health at the University of curative interventions to limited parts of the world. A North Carolina at Chapel Hill. She is a socio-behavioral new collaboration exists between the U.S. National scientist focused on integrating a patient/participant Institutes of Health (NIH) and the Gates Foundation to perspective to HIV cure-related research. advance cell and gene therapy towards both sickle cell disease and HIV [nih.gov/news-events/news-releases/ Michael Louella serves as the defeatHIV Community nih-launches-new-collaboration-develop-gene-based- Engagement Program Manager and is based at the cures-sickle-cell-disease-hiv-global-scale]. The goal University of Washington and the Fred Hutchinson is to find durable, safe, and accessible gene-based Cancer Research Center in Seattle.

PETERSON: ROBERT HOOD-FRED HUTCH HOOD-FRED PETERSON: ROBERT cures for HIV and sickle cell disease that can be

POSITIVELYAWARE.COM/SUBSCRIBE | MAY+JUNE 2021 33 Find a specialist at myhardbelly.com Actual patient living with HIV.

Is it HARD BELLY?* HARD BELLY isn’t regular fat. If you are living with HIV, learn the difference – find a specialist and make sure you’re heard.

*Also known as excess visceral abdominal fat my HARD © 2020 Theratechnologies Inc. All rights reserved. 727-01-03/20 – 7,875x10,75 BELLY A MATTER OF JUSTICE POSITIVELY AWARE webinar shines a light on health inequities among PLHIV during COVID-19 BY RICK GUASCO

or people living with HIV, the COVID-19 pandemic “From the studies that have CLOCKWISE has been especially stressful—from the uncertainty been done to date, it does look FROM TOP like [having] HIV...is associated LEFT: GINA of whether HIV makes them more vulnerable to this MARIE BROWN, with a somewhat increased risk of CHRISTOPHER new virus or prone to worse outcomes, to exposing more severe COVID-19 outcomes,” HUCKS-ORTIZ, them to stark social and health inequities. And with said Jefferys. “It’s not a huge JEFF BERRY, the development of COVID-19 vaccines have come more increase, and just something to be RICHARD F conscious of, not panic about.” JEFFERYS, AND questions, arising from misinformation in social media STEPHAUN E. It is uncertain to what extent WALLACE and historical medical mistrust, especially in communities HIV by itself plays a role, he added, of color. To address these fears and questions, POSITIVELY but a lower CD4 count might be AWARE organized a virtual webinar in March that brought significant. “It seems that having together researchers and community advocates. a lower CD4 count is a key factor where there’s an increased risk of worse outcomes or mortality for A Matter of Justice: COVID-19 and clinical assistant professor of people, particularly if they have Vaccines and Health Inequities in global health at the University of less than 350 CD4 T cells.” People Living with HIV featured Washington; Christopher Hucks- Citing a presentation by Dr. Richard Jefferys, the director Ortiz, MPH, director of HIV and Rajesh Gandhi, of Massachusetts of Treatment Action Group’s clinical services at Black AIDS General Hospital in Boston, he (TAG) Basic Science, Vaccines Institute; and Gina Marie Brown, noted risk factors for severe and Cure Project; Stephaun a community advocate who sits COVID-19 outcomes: E. Wallace, PhD, MS, director on the boards of the Black AIDS of external relations at the HIV Institute and Sister Song, and is n low CD4 count Vaccine Trials Network and the a member of The Well Project’s n older age COVID-19 Prevention Network, Community Advisory Board. n comorbidities and co-existing

POSITIVELYAWARE.COM/SUBSCRIBE | MAY+JUNE 2021 35 Pyramid of disparity A study of U.S. counties by amfAR’s Greg Millett found that the more white a county more than 94% white was, the fewer COVID-19 cases it had. 148,834 DIAGNOSES Conversely, the more racially diverse a county, the greater number of COVID 88%–94% white diagnoses—a pattern similar to HIV. 332,217 DIAGNOSES 77–88% white 880,045 DIAGNOSES 60–77% white 1,820,764 DIAGNOSES less than 60% white 3,995,398 DIAGNOSES

SOURCE: GREG MILLETT, JOURNAL OF THE INTERNATIONAL AIDS SOCIETY, VOLUME 23, ISSUE 11

‘We can’t leave it up to the same conditions such as cancer, car- Stephaun Wallace pointed environments, increasing the folks who diovascular disease, sickle cell to a study by Greg Millett, vice risk of and vulnerability to COVID disease, and type 2 diabetes president and director of public exposure. designed this n system to compromised immune system policy at amfAR, which compared These social disparities can due to solid organ transplant the racial diversity of counties in turn into structural determinants design the n obesity (body mass index, or the U.S. against the numbers of when government funding—and new system. BMI, greater than 30) COVID cases. public policy—are determined by We’ll find n pregnancy “The number of diagnoses is data that fail to take into account, ourselves n smoking so much higher in the counties or offer only incomplete informa- back in the where they’re less than 60% tion about, race and ethnicity. same place.’ Risk factors backed by mixed or white,” Wallace said. “In a sepa- “There was a report produced limited evidence include: rate paper, he’s shown exactly the by the Urban Indian Health same pattern for HIV diagnoses. Institute that graded the states on n comorbidities and co-existing And he created this kind of image how well they’re collecting race conditions such as moderate to to show what the parallels are... and ethnicity data that I think severe asthma, hypertension, there [are] all these pathways is absolutely important to read,” liver disease, neurological con- through structural racism that Wallace said. ditions such as dementia, and contribute to this overlap between “What we’re really talking about type 1 diabetes SARS-CoV-2 and COVID-19 and here are systems and how all of n being overweight (BMI HIV.” these systems sort of work or play between 25–30) People of color are over-rep- together,” he said. “Many of these resented in what have come systems are not just contempo- Older adults make up the larg- to be called essential services rary, they have historical stand- est group of COVID-19 cases—and industries—from retail inventory ings and originations, and they with the worst outcomes. Roughly employees to hospital work- continue to exist and permeate 40% of the general population was ers—with little ability to limit our communities now, and these over age 45, according to 2020 their increased public contact things continue to work in opposi- U.S. Census Bureau estimates, and greater potential exposure tion to healthcare.” and more than half of people to COVID-19, said Dr. Wallace. Asked how to address missing living with HIV in the U.S. are over Moreover, they are more likely to demographic data in health and age 50. People aging with HIV be in low-wage jobs that don’t pro- governmental systems, Wallace are more likely to have multiple vide health insurance, paid sick saw a role for activists. comorbidities or co-existing con- leave, or the opportunity to work “Allocation is left up to states ditions and illnesses, which often from home. to determine how they prioritize increase as they get older. Citing results from a 2017–2018 populations,” he said. “These survey by the U.S. Bureau of Labor are opportunities to think about Statistics, Dr. Wallace pointed out leading with an equity lens—that THE DISCUSSION TRANSITIONED that 30% of white employees said we don’t just think about race and to social determinants—and how they could work from home, while ethnicity, we also overlay that with racial, social, and economic forc- 20% of Black workers, and only older adults. And we also overlay es, both institutional and systemic 16% of Hispanics said they could. that with other groups that are disparities, drive the pandemic People of color also tend to experiencing underlying health for people of color who are living live in higher-density housing conditions that would place them with HIV. and in intergenerational home at an increased risk. It would be

36 MAY+JUNE 2021 | POSITIVELYAWARE.COM/SUBSCRIBE really important for health depart- she was a physician,” he said. ments that are thinking about this “She’s another example of a Black to think about this really critically. woman who wasn’t believed. It I would invite them to ensure that was the hospital’s response to HIV advocates are part of the con- her death—that’s what was so versation, you know, when they’re egregious. They basically painted thinking about what their plans her as a problem patient, and this are, how they want to modify or is exactly the kind of thing that update their plans to respond to happens to Black people when the concerns regarding allocation.” we go into healthcare spaces. When I think about how we need HOWEVER, ANY DISCUSSION to change the healthcare system, of public health systems must we need to dig deep. As we’re dig- address medical mistrust, partic- ging deep and doing the work to ularly within the Black community. transform systems, we also simul- Most often cited is the infamous taneously need to envision what “Tuskegee experiment,” conducted this new system is going to be. by the U.S. Public Health System We can’t leave it up to the same and the Centers for Disease folks who designed this system to Control and Prevention from GINA BROWN design the new system. We’ll find 1932 to 1972, which studied 600 ourselves back in the same place.” poor Black Alabama sharecrop- Hucks-Ortiz added, “Some pers, 399 of whom had syphilis ‘My daughter would of the work that Dr. Wallace is which doctors intentionally left doing through the Vaccine Trials untreated to observe its effects. have been 36 this year’ Network, and with some of the The unintended, but inevitable, work I’ve been doing through the consequence of Tuskegee and uskegee was however many years HIV Prevention Trials Network, many other instances of harm ago, but it still happens today,” we’re trying to address some of inflicted upon people of color was “Tactivist Gina Brown said. “I can go these issues and dismantle some an ingrained distrust of the med- to a doctor, and I can tell my doctor what’s of this. But it’s going to take ical profession. There are other hurting. My doctor will insist on telling me more of us to elevate the voices examples of institutional harm, what they think is hurting me, or they’ll and experiences, particularly of such as the forced sterilization of switch my words around and say what they women and of people of color.” poor women of color without their think they hear. Medical professionals have knowledge, but added to this leg- to learn to listen to us. It’s not that my grand- acy are the individual encounters mother had a bad experience, it’s that I had a Greg Millett’s report, New of racism and dismissal that Black bad experience.” pathogen, same disparities: and Brown people have experi- That bad experience has included how her why COVID‐19 and HIV remain enced at the hands of their own doctor has talked to her—or what the doctor prevalent in U.S. communities of care providers. didn’t tell her. color and implications for ending Moved by Gina Brown’s expe- “I never heard about U=U [undetectable the HIV epidemic, was published rience (see side bar), Christopher equals untransmittable, how HIV cannot October 2020 in the Journal of the Hucks-Ortiz offered another be sexually transmitted if someone is on International AIDS Society. READ dramatic example. Susan Moore successful antiretroviral treatment and IT at onlinelibrary.wiley.com/doi/ was a Black physician who devel- has undetectable viral load] until Bruce full/10.1002/jia2.25639. oped COVID-19, documented her Richman [founder and executive director doctor’s dismissal of her pain and of the Prevention Access Campaign, that The Urban Indian Health symptoms, and later died. raises awareness of U=U],” she said. “I have Institute’s report, Data Genocide “She documented her expe- two degrees, I’ve been living with HIV a long of American Indians and Alaska riences of not being listened to, time, and my doctor never thought it was Natives in COVID-19 Data, is at because she put on a [hospital] important to talk to me about that. That’s bit.ly/datagenocidereport. gown and got into the role of what needs to change.” being a patient—that’s something Brown shared with the virtual audience Moderated by POSITIVELY AWARE we need to talk about in public how racism and disregard of Black women in editor-in-chief Jeff Berry, A health, is how people get dis- need of health care profoundly altered her life. Matter of Justice: COVID-19 missed when you are in the role “I had a daughter who would’ve been 36 Vaccines and Health Inequities in of a patient, even if you’re a com- this year,” she said. “I was in labor prema- People Living with HIV was held petent medical professional,” he turely, and I went to the doctor and told him March 4 via Zoom. This webinar said. “Even if I’m not a physician, what I was feeling. And they sent me home. was made possible with support I’m an expert in this [pointing to They didn’t listen to anything I said. Women from Janssen Pharmaceuticals. himself with both hands]. And I are dying today, Black women are dying WATCH THE PROGRAM at need you to listen to me when I because when they are in labor, doctors are positivelyaware.com/justice. say, there’s something that doesn’t not listening. They’re not hearing us. What feel right, or, I have some concerns.” should happen is that in medical school, they Dr. Wallace offered his own should be given these tools to really hear.” perspective, and a call to action. “What was really egregious is not just that she died, and that

POSITIVELYAWARE.COM/SUBSCRIBE | MAY+JUNE 2021 37 POZ ADVOCATE SCOTT SCHOETTES @PozAdvocate Spring to summer to sex (with or without disclosure)

The 2021 state legislative sessions are winding the message), it is going to encounter—don’t divulge down in state capitals across the country, which be a lot harder for the other anything that could result in turns my mind to HIV criminalization and efforts person to claim that they a deprivation of your liberty. were unaware of your status. (I mean, if you’ve realized to reform or eliminate these unnecessary laws You don’t need the person to that hook-up is really the in states throughout the U.S. This year has seen sign a consent and release person of your dreams with some successful efforts—in Virginia, where the form, but getting them to whom you are going to spend law making mere non-disclosure a misdemeanor acknowledge in writing that the rest of your life, you may they are aware need to come was eliminated—and some continuing frustrations, of your status ...keep in mind clean about your such as Florida, where some promising movement is probably the that HIV-based status before closest thing we you get to the in 2020 was nowhere to be found this year. It was prosecutions can especially impressive to see victories this year, given have to a fool- altar—but that’s proof method of be brought in a different the additional obstacles to lobbying and advancing avoiding an HIV- any state under story.) Talk to a legislation during the COVID pandemic. based criminal general criminal lawyer before prosecution. laws, regardless of you talk to While we should celebrate this. In some ways, I dislike Third, if you whether the state the police or these victories, it is important even making these sugges- have access to has an HIV-specific disclose your for people living with HIV to tions, because we should not care, try to be law on the books. status to them. keep in mind that HIV-based need to do these things sim- adherent to your Too many times prosecutions can be brought ply to be sexually active, but HIV medications. I have had to in any state under general if taking one of these steps If you are having sex without counsel someone who has criminal laws, regardless can prevent jail time, it seems disclosing your status, having already shared too much of whether the state has an worthwhile to consider them. an undetectable viral load is with the police. Though they HIV-specific law on the books. First, when it is safe, probably the best thing you will try to convince you other- Texas is a good example of disclose your status prior can do to avoid prosecution. wise, if they are investigating a state where HIV-based to sexual activity. I know, I Courts are slowly coming the situation, the police are criminal prosecutions still know—easier said than done, around to understanding not your friends and won’t occur even though the state right? The idea that disclo- that undetectable equals “try to help you out.” Invoke repealed its HIV-specific crim- sure is expected or should be untransmittable (U=U), and your constitutional rights to inal law decades ago. easy “if you really care about criminal defense lawyers remain silent and to have a I recently represented a the person” is based on the are starting to have more lawyer present. doctor in Texas called as a antiquated, hetero-normative success in talking prosecu- I’m not trying to frighten witness to testify against her idea that sex only happens tors out of pursuing cases you too much or make you own patient who was being when two people are in a in which there was no real overly anxious, dear reader, tried under a sexual assault deeply connected, emotion- risk of transmission. This but I am trying to scare you law for not disclosing his ally intimate relationship. suggestion is certainly not just the right amount. In a status. Once the prosecutors Because sex in fact happens fail-safe by any stretch of the world where any person living realized that the doctor was in all kinds of circumstanc- imagination, but it is quite a with HIV is just one jilted lover not going to cooperate, they es that don’t involve that bit better than nothing. And, or one night of awesome (or offered the defendant a level of intimacy or trust frankly, you’re getting a two- bad) sex away from potential much better plea deal, essen- (or sometimes even the for out of it, because being jail time, you really can’t be tially time already served person’s name), disclosure adherent to your meds is also too cautious. I hope the sex is while awaiting trial. But can be a vulnerable, difficult, the very best thing for your amazing—and that you can the fact that these types of or even dangerous choice. long-term health. Worry-free keep yourself safe from pros- charges—like sexual assault I’m not saying that it is for sex plus physical health is a ecution at the same time! or reckless endangerment— everyone—or for anyone pretty good combination. are being used in the context every time—but disclosure of Finally, don’t talk to SCOTT SCHOETTES is an of non-disclosure of HIV one’s status does reduce the the police. If you do find attorney and advocate who status serves as a cautionary chances of prosecution. yourself the subject of an lives openly with HIV. He tale for everyone living with Second, when you do investigation—or even if that engages in impact litigation, HIV in every state. disclose, try to document it. hook-up that you didn’t tell public policy work, and People living with HIV can Again, this may be easier said because you were a little education to protect, enhance, do things to protect them- than done. But if it’s in your too drunk to care suddenly and advance the rights of selves from becoming the Grindr profile or you disclose becomes curious about your everyone living with HIV. subject of a prosecution like via a text message (and save status a few days after your

38 MAY+JUNE 2021 | POSITIVELYAWARE.COM/SUBSCRIBE Follow Us on Social Media. Invite others to do the same! Like and share Illinois HIV Care Connect messages on social media. Go to our Twitter, Facebook, Instagram, YouTube and Pinterest pages and help us extend HIV prevention and treatment across Illinois:

@ILCareConnect

Facebook.com/ILCareConnect Facebook.com/ILCareConnectSpanish

@ilcareconnect

youtube.com. Search “Illinois HIV Care Connect”

pinterest.com/ILCareConnect

Illinois HIV Care Connect will be continually posting on social media to communicate the benefits of Illinois HIV Care Connect to people living with HIV in Illinois.

Illinois HIV Care Connect is a statewide network providing medical case management, health care and support services to persons living with HIV. Eight regional offices coordinate the services provided through the program, which is funded by the Illinois Department of Public Health and federal grants and supported by the Illinois Public Health Association. Visitors to the website can find valuable information about Illinois HIV Care Connect, as well as information about the Illinois ADAP Medication Assistance Program (ADAP-MAP) and Premium Assistance Program (PAP).

hivcareconnect.com Funding for this publication was made possible by the Illinois Department of Public Health. POSITIVELY AGING

If you lived through the first decades of HIV/AIDS, you know what I mean. The relatively recent science of “unde- tectable equals untransmittable” (U=U) has become a kind of sexual revolution for people living with HIV/AIDS—we don’t transmit HIV to sexual partners if we’re virally suppressed!—leading to a sexual reawakening among us, not to mention an avalanche of workshops and studies on the concept of sexual pleasure among people living with HIV. That focus was unthinkable only a few years ago. Alas, timing is everything. We got this fabulous news about posing no risk to our sex partners around the time that most aging survivors were entering late- middle-age. Just when we got the “all clear” signal, our own interest in sex was already beginning to wane. It’s bemusing to hear stories and read articles about all those happy, horny people living with HIV out there who are U=U-ing their brains out like it’s spring break in Fort Lauderdale. I’m happy for them, really. I bet most of them are younger than me. My sex life with my husband has gone from three nights a week a decade ago to a lone date night on Saturday—unless there’s a new episode of something we’re binge watching. Then we might Not having as much sex? put the big event on hold a bit longer. (I know. I have a husband and he’s a sure thing, and he’s terribly underutilized. You’re not alone We’re okay with that.) I might sometimes miss my sex life BY MARK S. KING as it once was—it was adventurous and fun and terribly exhausting—but life still holds plenty of surprises. Aging is myste- My sex life in the 1980s before AIDS came along was glorious. rious and freeing and terrifying. Hang on. My endurance level was Olympian, my sexual response time was faster For similar feelings of emotional security and contentment—and for than a wink from a cute man, and body fluids went flying like they were those of us who are without a regular sex shot from cannons. partner—I have learned to lean on my friends for emotional support. I used to Today, I am 60 years old. It’s easy to HIV arrived, it turned sex into something be too trapped in my masculine armor wonder what happened to that drive, dangerous, sickly, and even criminal. We to tell the people close to me that I love but the answer is simple: 35 years. It became walking vectors of disease to be them. Not anymore. I hug my friends, can be hard to admit, considering our shunned and dismissed. The very idea especially when it’s been a while (lord sexually-fixated culture, but I don’t have that we might pursue a satisfying sex life almighty, we all have some catching up the drive, the interest, or the filled dance was viewed as ludicrous. to do). card that I used to have, and frankly, my That kind of withering judgment Older folks living with HIV are enter- dear, I don’t give a damn. sticks with a person. That’s trauma. It’s ing a phase of life in which we discover That’s a secret we don’t discuss near- one thing to become an empowered profound pleasures that are not centered ly enough. We’re aging and we’re chang- patient, or to stand up for your rights on sex, while the brains of our younger ing. It isn’t a crime to as a person living friends are too hormonally addled to want sex less often. And, Just when we got the with HIV. It’s quite notice them. while it’s easy to blame “all clear” signal, our own another to come Good for us. Good for them. If they my sexual insecurities interest in sex was already to terms with your are incredibly lucky, they will live long on all those gay hookup beginning to wane. body—and your enough to discover these secrets for apps and shirtless sel- bodily fluids—as themselves. fies, the fact is gay men didn’t invent a something with the potential to kill peo- society in which sexual allure equates to ple. Just imagine the ecstasy of orgasm Mark S. King is a long-time HIV survivor social status. Just ask the parents of any with a sexual partner while, in that same and writer best known for his award- teenaged girl. precise moment, being scared to death winning blog, MyFabulousDisease.com. As people living with HIV, our rela- you’ll spill something in the wrong place

tionship with sex is complicated. When and hurt them. MATT ROTH

40 MAY+JUNE 2021 | POSITIVELYAWARE.COM/SUBSCRIBE BEING BRIDGETTE BRIDGETTE PICOU

Too young to be this old

About eight years ago I became a grandparent. somewhere and be still. Puh! Not. To be both dramatic and honest, I was a little traumatized. I’m single and trying to navigate dating, the desire to mingle, and How did this happen? Overlooking the obvious “my kid had maybe find love along the way. sex” thing, I was too young at 40 to have a whole human be General society thinks I’m sup- my “grand” anything. I made the unilateral decision he was posed to be and look “sick” or like I “have something” with HIV, not be going to call me GiGi since it sounds somehow sexier and a good-looking woman with great younger than Grandma or Granny or good grief, Big Momma. skin (even if I do say so myself). Hell, as a woman of a certain age, Around that same time, I had they were in their 60s. Your crazy having acquired HIV at a certain been diagnosed as HIV positive. Auntie June was 46, wild, smoked age, general society would like to Honestly, my age didn’t play much a little pot, and hung out with know how did I get HIV in the first into that except as a footnote of young folks, but still—she was old. place? ’Cause you know, I don’t fit gratitude that I had lived a little life My, my, what a difference living the mold [dramatic eye roll]. I’m and had some life experience to a decade or two makes for your supposed to be taking a handful fall back on to help sort out what perspective! of medications instead of one pill was and what would be. Folks get I’m the grandparent now. I’m once a day. All these old ideas peo- Folks get so caught up in what they think the youngish-old aunt explaining ple have about those of us living so caught life with HIV is, they forget there to her nephew about vinyl albums and aging with HIV have to deal is actually a life being lived under and watching his fascination while with and try to dispel. I like to call up in what the acronym. It evolves for us just the needle hits the record and his how I live my life at this point living they think like it does for everyone. If I had eyes light up while the music plays. by example. I don’t have to shout life with a dime for every time someone I roller skate, and dance and hang my status at every person I meet HIV is, they said I didn’t look like I had HIV out with younger folks. I’m still or try to convince them I’m fine, forget there or looked too young to have a somehow surprised that I have an or better—that I’m thriving—I can grandchild, I’d be writing this from adult child. My son was absolutely just go about my business and live is actually my vacation in Negril rather than mortified when my grandson my life. Which means navigating a life being my bed. found my massager (you know, a life process that includes aging lived under Fast forward to a little over a the personal one). I told my grand- with HIV, countering anxiety and the acronym. year ago, and Gigi’s Baby came son it was just that—a massager, depression with hope, and counter- to live with me. Only now [insert to keep it simple—then proceeded balancing a small human to raise more drama here], I’m too old for to convulse with laughter over the in a digital age when all I want is this grandmother thing! Parenting next two days as he ran around for him to go outside and play like I at nearly 50? He is a light in my using it as everything from a light did when I was that young. life, keeps me on my toes, and on saber and a rocket to a voice Even if I can feel the rain com- a good day both makes me laugh changer to tickling the bottom of ing in my joints and while my knee and need to rub Tiger Balm on his own feet with it. I thought my hurts when I skate, I’m still going my knees trying to keep up! I am son was going to melt through to enjoy the rain and skate ‘til I’m simultaneously too young to be the floor! I’m positive his dismay 80. I’m still going to put the needle this old, and too old for this mess! was more about the fact that I on the record and listen to it snap I’m still trying to figure out when had a personal massager than my and crackle with my digital playlist my joints got old enough for me grandson playing with it. I can only on standby on my phone. to feel when it’s going to rain, let imagine what my twenty-some- Oh, and get a massage every alone keep up with Fortnite and thing self would have done if I had now and then. YouTube personalities. found one in my mother’s drawer. That’s the thing about aging. It Forty is the new 20, right? Bridgette Picou is a licensed changes your reality. In small ways Our own personal perspectives vocational nurse in Palm Springs, you’re constantly coming to terms change as we age, but not every- California. She is also an active with both your own ageism and one keeps pace with our changes. HIV blogger and contributor to the that of society. It’s like when you Society sometimes is slower to CDC’s “Treatment Works” public were 16 and 21, with its promise change within a time frame. The service campaign. Finding a voice of adulthood seeming to take for- 40s are known for being a wom- in advocacy and activism is a ever. Being 25 and worrying about an’s sexual peak, but only cougars natural progression, since she what you’d accomplish by 30, and and loose women talk about that, feels that every time she fights throughout all of this your grand- right? It’s more socially acceptable for someone else, she affirms her

PHOTO: CHAD SAIN • BACKGROUND MURAL: BACKGROUND CHAD SAINPHOTO: • RAMIREZ ERNESTO parents were practically decrepit if if I sit my HIV-positive self down own life.

POSITIVELYAWARE.COM/SUBSCRIBE | MAY+JUNE 2021 41 42 Aslett Anne with Q&A MAY+JUNE 2021 |POSITIVELYAWARE.COM 2021 MAY+JUNE L Looking deeper to dispel to dispel Looking deeper stigma and fear The former Executive Director of Rock Director Executive former The Anne Aslett talks about the effects of HIV stigma, of talks the about Anne effects Aslett AIDS in 1993 and brought the idea to brought and idea the in 1993 AIDS As we mark 40 years since the first first the since years 40 mark we As 29th annual Academy Awards Viewing annual Academy 29th Stigma is born from fear,Stigma from is born of lack and Since then, the event has continued to continued event has the then, Since and the work the foundation is doing to fight it Party. Since its inception, the funds funds the inception, its Since Party. treating thistreating disease. support and regimens drug testing, have Wetreatment. all effective can the the Vote, Patrick Lippert, became ill with became Vote,the Patrick Lippert, if people feel too scared to come and and to come scared too feel if people are AIDS with and HIV is that people thing heartbreaking information. The pandemic. important, lifesaving work we do every every we do work lifesaving important, n really is the huge barrier that stops that stops barrier huge is the really stigma So togoing make progress. of their status ashamed tomade feel grow we’re and our for now preparing INTERVIEW BY INTERVIEW and medical advances we’ve advances and made medical in things, we’re then these not access help and necessary the to access afraid too are or not seek do aresult, as and raised at the Oscar party support the the support party at Oscar the raised Hills’ restaurant. at Beverly Drive Maple us from optimizing from us all of scientific the day. EJAF is now working across four day. across is now working EJAF coming the stigma, discrimination stigma, the coming and our Foundation to host an Oscar party our Foundation party to an Oscar host continents and is committed to over is committed continents and around HIV? about? come event the did How services you could possibly want, but possibly could you services reported cases of AIDS, why do you you do why AIDS, of cases reported think there is still so much stigma stigma much so still is there think eglect that keeps us from ending this from us that keeps eglect , CEO of Elton John AIDS Foundation Foundation AIDS John Elton , CEO of famed Oscar party,famed Oscar we asked EJAF CEO Anne Aslett to fight HIV stigma and discrimination is still relevant, Harris, Dua Lipa, Sir Elton John and David Furnish for the with NeilFoundation Patrick Awards Academy Viewing Party all these years later. about why this event and the work of the foundation eading up to JEFF BERRY JEFF the first virtualAnnual29th Elton JohnAIDS /SUBSCRIBE - COVID. The reality is that COVID. reality The One of the worst effects effects of worst the One What are some of the the of some are What for us to work with young people, to to us with youngfor people, work of what fear The society. for to address that. It’sto only by address looking how and vulnerable why so are they out find at and risk most with those to work blaming or tropes myths the wrong or simplistic stories about we don’t or can’t understand you’ve seen in your your in seen you’ve inalizing has This them. is damaging for them and and is damaging them for in shadows—which the isolation of people problems. That’s why it’sproblems. critical so humanity, these that we solve really beyond It’s to harder look pandemic. excluded, are who people responsible, how to stop it. This has how to has it. stop This responsible, nity, blaming for them risk ofrisk HIV, by often a dispel incorrect scare stories like stories scare incorrect dispel deeper, our common by recognizing during COVID-19 the happened also how it’s is who spread, a disease: d effects of stigma that that stigma of effects control also to leads dangerously excluding whole groups of stigma is the social of social is stigma the work and that of the the of that and work like LGBT the commu living at with or high Foundation? shamed or punished hide hide punished or shamed lso happened during happened lso isease, and even crim even and isease, - -

PHOTO: PHOTO: leads to dangerously todangerously leads ‘The fear of what we what of fear ‘The don’t or understand wrong or simplistic simplistic or wrong can’t control also also can’t control disease: how it’s how disease: stories about a about stories how to stop it.’ tostop how spread, who is is who spread, responsible, — Aslett

COURTESY OF ANNE ASLETT • JOHN AND FURNISH PHOTOGRAPHED BY MICHAEL KOVAC AIDS. We advocate to laws Wethat change advocate AIDS. Awards Viewing Party. Young rep Awards Party. Viewing people flexible and sensitive HIV testing and and sensitive HIV testing and flexible In the 1990s I knew many people, mostly mostly many people, Iknew In 1990s the What is the Foundation doing to help help to doing Foundation the is What Firstly, we want to keep as many people Firstly, many we want people as to keep to and under by kissing is spread HIV HIV/AIDS. Their voices, their survival, HIV/AIDS. their survival, voices, Their future will bring. we give them the right tools for what the what right the for the we give them tools time in their lives gay men faced judge time gay in faced their men lives this work, we sensitize health workers, all world, the over programs treatment tion but are disproportionately affected affected disproportionately are but tion wi of many, and, in eyes tence the apunish- the world. We develop programs with world. Wethe programs develop information we share is true and helpful,information and we is share true is the engineis the that will make sure we healthy and safe as possible, so we fund we fund so possible, as safe healthy and is still a crime in 68 countries around around is still countries acrime in 68 policymakers, community and leaders b people, with funding from our Academy with funding our Academy from people, young for developing we are platforms themselves to protect choices practical to receive that allow people partners model empathy, compassion and a real empathy, areal and model compassion ment and ostracism. How did that solve did How that solve ostracism. ment and resent 25 percent of world’s the 25 percent popula- resent ment for immorality. topment for on of living So gay living were who with men, HIV desire to and fight understand epidemics role adults confusing. Ifand as we can a are most likely to succeed. As part of part As likely to most are succeed. in ways that challenges these address attitudes towards people living with HIV/ towards people attitudes disease’ had no cure. sen no had adeath It was disease’ The ‘gay terrified. absolutely were and and those they love, like they those online the and judge or criminalize or judge HIV, in case is the as cases. That’s 1600 young people infected infected young people That’s 1600 cases. could to and to understand help. especially for those most vulnerable to vulnerable most those for especially others who have the ability to have change who ability the others of the disease, likeof disease, LGBT. the Homosexuality confidential,accurate information and like HIV, make sure if that we can the likely vulnerable kill at them, most the Do you have a personal connection connection apersonal have you Do s owning and that your discovering stand some U.S. states, or groups at severe risk risk groups at or severe U.S. states, some battle HIV stigma? HIV battle to the work that you’d care to share? to care you’d that work the to exuality and sexual health can be scary scary be can health sexual and exuality nything? That’s why Iwanted to all do I y HIV, of new percent up making 36 th a disease that they knew would that knew they th adisease - - POSITIVELYAWARE.COM - - Although the fight is far from over,from fight the far is Although feel I African American man has a 60% a60% has man American African Anything else you’d like to add? to like you’d else Anything What can others do to help fight stigma stigma fight help to do others can What young people. Education is key,Education chal- evolving an yet from a place of in love all aplace we from do, the than adults do. The Foundation is work adultsthan do. The day.with each HIV group age is This the conversation about homosexuality homosexuality about conversation the t impact will be so much will greater.impact so be ing to ensure that services are accessible accessible are ing to ensure that services believe that humans are enormously that humansbelieve enormously are hate ugly in and today, our world we truly k livingple with like HIV anyone else—with resilient, kind and compassionate. If we compassionate. resilient, and kind religious and cultural voices to change religious cultural and voices decrease fear and stigma. And treat peo treat And stigma. and fear decrease are bringing together non-profits with non-profits bringingare together and HIV.and eltonjohnaidsfoundation.org For more information continue together, working operating and optimistic. is Even alot of though there o lifetime chance of contracting HIV,lifetime of contracting chance we lenge. We continuelenge. must educating and raise awareness about HIV? about awareness raise and services and support in different ways support and services care require and health savvy and smart he public he and to help disprove myths indness and love. love. and indness n the platforms that are best suited to that best are platforms n the In the Southern U.S., agay where In Southern the /SUBSCRIBE GO TO GO

. | MAY+JUNE 2021 2021 |MAY+JUNE - - DAVID FURNISH ELTON JOHN HUSBAND HUSBAND ABOVE: WITH 43

FRONT COVER BACKSTORY

Symbol of longevity DAVID FRANCO

ometimes it’s the little things that pack so “I can focus not only on “COVID-19 has changed how much significance. Take sunflowers, which appear being a positive man, but photographers approach alongside Cameron Siemers on the cover of this being something positive shoots, and it can be a bit dif- issue. Among the many meanings in various in the world,” he says. “The ficult to connect with clients cultures, sunflowers signify longevity. So it was only fact that we’re alive and still while wearing a mask, but natural to incorporate them into the photo shoot. going, I think, is just positive I’ve managed to make it work in and of itself. The hard stuff by keeping the vibe positive. SAt 39 years old, Cameron “I kind of wanted to stop we go through kind of gives Even though I’m fully vacci- Siemers is a long-term living with this secret,” he us a perspective that most nated, I still wore a mask for survivor of HIV. He acquired says. “I didn’t really feel people don’t get to have, that the duration of the shoot. I the virus at the age of seven like I needed this big secret we’re down through our core, want my subjects to let their through a blood factor during anymore, especially because pretty much the same and guard down, and I think cre- treatment for his hemophilia. I wanted to continue to want the same things in life.” ating a safe inclusive space As a youth, he started speak- speak more openly at bigger helps put them at ease.” ing at colleges and events events and have a larger FOR LOS ANGELES-BASED as an ambassador for the platform. So, I actually spoke photographer David Franco CHECK OUT Franco’s photo- Elizabeth Glaser Pediatric at my high school just before the photo shoot presented graphy on Instagram: AIDS Foundation. But it graduation.” creative and practical chal- @davidfrancophoto wasn’t until just before high He has continued to lenges in this COVID era. —RICK GUASCO school graduation that he address stigma and the igno- “The main thing for me became public about his sta- rance and misinformation was to make sure he was tus in his personal life. surrounding living with HIV. comfortable,” Franco said.

44 MAY+JUNE 2021 | POSITIVELYAWARE.COM/SUBSCRIBE 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

EMD Serono is a business of Merck KGaA, Darmstadt, Germany ©2020 EMD Serono, Inc. US-NONE-00026 Living with HIV?

You want expert, compassionate HIV-Certified Pharmacy Teams pharmacy care. Financial Assistance

Avita is a national pharmacy services and solutions 24/7 Pharmacist Access organization with deep expertise in HIV, PrEP, and LGBTQ+ Free Delivery care. We want you to feel deeply understood, cared for, and empowered to reach your full potential for health. Care Team Support

Visit us online at avitapharmacy.com/HIV to learn more and transfer to Avita.