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COVID-19 AND LATINX STORIES OF WOMEN REMAKING THEIR LIVES THE SAN FRANCISCO 30 PRINCIPLES BREAKING THE CYCLE OF ADDICTION

POSITIVELY AWARE HONORING THIRTY YEARS PUBLISHED BY TPAN NOV+DEC 2020

9:30 AM: DECATUR, GEORGIA DEVIN MIDDLETON: A day with HIV is another day for me to bloom. To grow. To bask in the light and plant my own seeds into this world. AEVERYDAY DAY MOMENTS IN EXTRAORDINARY WITH LIVES HIV 4:10 PM: LAS VEGAS, NEVADA Davina Conner: Not letting today's issues get me down. Working from my mom's house today; she took this picture. A SPECIAL SECTION OF PHOTOS TAKEN ON A DAY WITH HIV BEGINS ON PAGE 40

© 2020 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.

2 NOV+DEC 2020 | POSITIVELYAWARE.COM/SUBSCRIBE NOV+DEC 2020 POSITIVELY AWARE • VOLUME 30 NUMBER 6 • positivelyaware.com • @posaware

EVERY ISSUE THIS ISSUE 5 15 32 EDITOR’S NOTE Breaking the cycle Mind, body, and medicine Finding your voice. Finding a way out of addiction— Taking care of your mental health with a roadmap. while living with HIV. 7 BY JEFF BERRY BY JACOB PETERS, PharmD BRIEFLY Generic Truvada and Atripla now 18 34 available. Dovato shows promise Addressing partner violence A great love endures for rapid start. New cure potential. and trauma in the time of COVID-19 Remembering the grace and joy Gilead privacy lawsuit. PrEP on Survivors and advocates face of Timothy Ray Brown, the vacation. Remembering Paul new problems, and develop new first person cured of HIV. Stalbaum and Lark Lands. forms of support. BY MARK S. KING BY OLIVIA G. FORD 47 36 POZ ADVOCATE 24 Reclaiming identity COVID and people living Stories of women remaking a life A musician and educator with HIV in jails and prisons Overcoming trauma and reflects on his journey. BY SCOTT SCHOETTES stigma to live free. INTERVIEW BY RICK GUASCO COMPILED BY ENID VÁZQUEZ

THIRTYTHIRTY YEARS YEARS OF OF LIVING PA30 POSITIVELYPOSITIVELY AWARE AWARE 26 39–46 At the nexus of body and soul SPECIAL SECTION 48 An HIV doctor seeks solutions A DAY WITH HIV 2020 Past, present, future beyond medicine. 24 HOURS IN THE LIVES Survival allows the story to be told. INTERVIEW BY ENID VÁZQUEZ OF PEOPLE AFFECTED BY HIV BY ENID VÁZQUEZ 28 50 COVID-19’s impact on POSITIVELY AGING Latinx communities The San Francisco Principles The pandemic is hitting Latinx people Advocates issue new declaration harder; HIV researchers say for a new era. it’s time to create policy changes. BY ENID VÁZQUEZ 52 THE CATEGORY IS... In-your-face realness If you’ve faced HIV-related stigma, how did you confront it? COMPILED BY RICK GUASCO

‘You know what? It’s time for me to live for me. I can’t live for how people want me to be.’ —Tiommi Luckett, PAGE 27

POSITIVELYAWARE.COM/SUBSCRIBE | NOV+DEC 2020 3 FRONT COVER(S) BACKSTORY

ONE ISSUE, THREE COVERS. POSITIVELY AWARE’s annual anti-stigma campaign portrays 24 hours in the lives of people affected by HIV. On September 22, 2020, people across the U.S. and from 11 other countries captured a moment of their day, posting their pictures and sharing their stories with the hashtag #adaywithhiv. In addition to a selection of photos appearing on pages 40–46, there are three different versions of the foldout cover for this issue, shown below. An online gallery is also on view at adaywithhiv.com.

< 5:34 PM: SEATTLE, WASHINGTON TJ Elston: Letting go of all the shame and negativity of the 21 years of living with HIV, and starting to celebrate me. Sept. 22 is my 51st JOIN IN THE birthday, and my one-year anniver- CONVERSATION sary of marrying my husband, James (on the right). [email protected]

@posaware

POSITIVELY AWARE 5537 N. BROADWAY CHICAGO, IL 60640-1405

ALL LETTERS, EMAIL, ONLINE POSTS, ETC. are treated as letters to the editor unless << 12:45 PM: SAN FRANCISCO, CALIFORNIA otherwise Bobbee Trans Mooremon: Nothing instructed. but Glittery Purple Unicorn Magic. We reserve the right to edit for < 4:47 PM: PHOENIX, ARIZONA length, style, Jacundo Ramos: Three years ago or clarity. Let I had no idea that HIV would help us know if you me shed my old skin and help me prefer not to have grow into someone new. Three years your name or city later I am stronger, happier, kinder, mentioned. and more levelheaded than I ever would’ve imagined. Meet yourself where you are, and understand that GET YOUR the way you are feeling right now is SUBSCRIPTION valid. Remember that your story is a OR ORDER radical act of healing. BULK COPIES

SCAN THIS QR CODE with your smart- << 9:30 AM: DECATUR, GEORGIA phone, or go to Devin Middleton: A day with HIV is positivelyaware. another day for me to bloom. To grow. com/subscribe To bask in the light and plant my own seeds into this world.

< 2:54 PM: NEW YORK, NEW YORK Dana Diamond: I fight stigma by telling my story. Ready for a day of work at Exponents, a community-based organization, where I’m fortunate to work as the director of health services. Educating all about HIV and assisting HIV+ people to take care of their health. Also, preventing overdose by training and distributing Narcan kits. This helps me also stay in a positive environment by doing what I love and taking care of my health.

4 NOV+DEC 2020 | POSITIVELYAWARE.COM/SUBSCRIBE EDITOR’S NOTE Make your monthly recurring PA Impact JEFF BERRY @PAeditor Member contribution today, or a one-time donation, and help make a difference in the lives of those living with and affected by HIV. You may help save a life. positivelyaware.com/impact Finding your voice

A funny thing happened during the pandemic—I lost my voice. Not my ability to speak, mind you, rather the ability to speak through my writing.

According to Wikipedia, “writer's block is a condi- could potentially die from the economic impact of tion, primarily associated with writing, in which an COVID-19 than the virus itself. author loses the ability to produce new work or experi- According to a new report in JAMA as reported by ences a creative slowdown. This loss of ability to write CNN, “a second mental health wave will bring further My story and produce new work is not a result of commitment challenges, such as increased deaths from suicide is my story, problems or the lack of writing skills. The condition and drug overdoses, and will have a disproportionate ranges from difficulty in coming up with original ideas effect on the same groups that the first wave did: but it may not to being unable to produce a work for years. Writer's Black and Hispanic people, older adults, lower socio- reflect your block is not solely measured by time passing without economic groups and health care workers.” experience. writing. It is measured by time passing without pro- The daily assaults on our freedom and liberties, ductivity in the task at hand.” from the administration itself, threaten the very fabric Your story “Time passing without productivity in the task at of our lives. The deaths of George Floyd, Breonna has meaning. hand.” I can definitely relate. In that respect, I imagine Taylor, Ahmaud Arbery, and so many others have led It has value. many of us are experiencing writer’s block. Over the to nationwide racial justice demonstrations and calls last nine months I’ve spoken with countless people for true change. The majority of people in this country who are going through the same thing in their work or support the Black Lives Matter movement. Meanwhile, their lives. Whether it’s the inability to meet deadlines, white supremacist groups who have felt emboldened or everything seeming like it’s a struggle, or how proj- by the current administration were caught plotting to ects seem to take much longer to complete than they kidnap and kill the governor of Michigan. used to or are just plain overwhelming—the block is I could go on and on, but after a while you become not just for writers anymore. desensitized to the violence and injustice, and just When I came on as editor of POSITIVELY AWARE want to shut it all off. But that doesn’t work either. in 2005, I always tried to speak from the heart, espe- So what do we do? cially in my editorials. That’s when it seemed, at least We speak up. We use our voice. We say, no more. to me, that my writing would most connect with other For those of us who may be in places of power we are people, when something I revealed about myself was obliged to use our privilege to speak up for those who something they could relate to in their own life, or have no voice, but also recognize that we need to lift was similar to what they were going through. up other voices and let them speak for themselves. I was unafraid in my writing, but for some reason, My story is my story, but it may not reflect your expe- I now feel paralyzed. rience. Your story has meaning. It has value. It has the COVID-19 has taken so much from us. It has taken ability to lift us all up, as well as perhaps help that one lives: As of this writing over 250,000 have died in the person right now who can relate to what you are say- U.S. by some estimates, with more than one million ing, and needs to hear exactly what you have to say at deaths globally. It has taken our livelihoods: 22 million this particular moment in time, to begin to find their people have lost their jobs, and according to a recent own voice. Pew survey, about half of those are still without a So don’t hesitate, don’t hold back. Make your voice job—and one in four adults have had trouble paying heard. Bang the drum slowly—and loudly. We need their bills. you. And don’t forget to wear a mask, practice physi- The disproportionate impact of the virus on people cal distancing, and wash your hands frequently. of color and marginalized communities is devastating. The cruelest irony: While some of us here in the U.S. Take care of yourself, and each other. stock up our cupboards and closets with food staples, the United Nations warns of a looming food crisis, stating that the pandemic could have a devastating impact on global hunger and poverty—more people JOHN GRESSJOHN

POSITIVELYAWARE.COM/SUBSCRIBE | NOV+DEC 2020 5 30 A SPECIAL MESSAGE

POSITIVELY AWARE You can make an impact

JEFF BERRY EDITOR-IN-CHIEF “POSITIVELY AWARE saved my life.” We’ve heard that from readers @PAeditor more than once over the years, but each time it affirms for me that ENID VÁZQUEZ the work we are doing makes a difference. ASSOCIATE EDITOR When you support POSITIVELY AWARE (PA) as an Impact Member, you help @enidvazquezpa TPAN deliver critical HIV health news, treatment information, peer stories, and inspirational profiles to people affected by HIV. With every issue, we serve more ANDREW REYNOLDS than 100,000 readers—including long-term survivors of HIV, individuals living HEPATITIS C EDITOR @AndrewKnowsHepC in isolation who turn to PA as their confidential, go-to health resource, and care providers working to better serve our HIV-affected communities. RICK GUASCO We asked readers in a recent survey what their concerns were. One reader CREATIVE DIRECTOR told us: “Misinformation. There is still so much stigma. And I believe that trust- @rickguasco worthy resources regarding HIV/AIDS, such as POSITIVELY AWARE, are a great resource to share with others.” SCOTT SCHOETTES Our readers consistently tell us that they turn to PA to help make sound, LEGAL COLUMNIST informed decisions about their health. “The more I learn, the better equipped I @PozAdvocate am to teach,” one health educator said. PROOFREADER Readers also tell us that PA uplifts and inspires. “I am an HIV advocate and JASON LANCASTER love to read POSITIVELY AWARE!” said another. Because of subscribing members and supporters like you, we tackle impor- PHOTOGRAPHERS tant issues and help HIV-affected individuals on the path of life. Many readers HABEEB MUKASA express concern about aging well with HIV. One asked, “How am I going to sur- JOHN GRESS vive financially in retirement? I did not plan on living this long.” CHRIS KNIGHT When you subscribe and donate as a PA Impact Member, you are an integral DERRICK WOODS-MORROW part of our mission. You help make sure that PA reaches more readers who need us and PA’s trusted resource of accurate, up-to-date treatment information and ADVERTISING MANAGER LORRAINE HAYES important news for people living with HIV/AIDS as well as our advocates. Every [email protected] issue, PA arrives in mailboxes, non-profit and health care settings, and readers’ hands around the country and the world, reaching some of our most isolated DISTRIBUTION MANAGER peers and community members. Most notably, POSITIVELY AWARE is free to DENISE CROUCH anyone who is HIV positive or unable to pay. This is our mission. [email protected] Go to our website at www.positivelyaware.com/impact, use the enclosed envelope, or contact us (see below) to make a monthly recurring gift of $5 or SUBSCRIBE OR ORDER COPIES more to become a PA Impact Member. Your support not only carries member- positivelyaware.com/subscribe ship benefits for you, it helps us uplift all communities affected by HIV. Impact Member includes:

LIVE LIFE POSITIVELY AWARE. n FREE annual subscription to PA's mailed print edition (6 issues per year, mailed discreetly to you) FOR 30 YEARS, PUBLISHED BY n PA's annual HIV Drug Guide. Your handbook to the medications prescribed for HIV, along with the latest HIV treatment news n PA Update. Our bi-monthly email news update, alerting you to latest issues 5537 N. BROADWAY and stories CHICAGO, IL 60640-1405 n Invitation to the annual PA Online Update: a virtual update from experts (773) 989-9400 and PA contributors fax: (773) 989-9494 n Invitation to our PA30 Celebration: an online experience celebrating our [email protected] 30th anniversary. positivelyaware.com @PosAware Make your monthly recurring PA Impact Member contribution today, or a TPAN was founded in 1987 one-time donation, and help make a difference in the lives of those living with in Chicago as Test Positive Aware and affected by HIV. You may help save a life. Network, when 17 individuals living with HIV gathered in a living room to share information and support In gratitude, in response to the HIV/AIDS epidemic. POSITIVELY AWARE is Jeff Berry the expression of TPAN’s mission EDITOR to share accurate, reliable, and timely treatment information with anyone affected by HIV. positivelyaware.com/impact BE GREEN. SHARE OR RECYCLE THIS MAGAZINE. POSITIVELY AWARE 55±7 N. BROADWAY CHICAGO, IL 60640-1405 (77±) 989-9400

6 NOV+DEC 2020 | POSITIVELYAWARE.COM/SUBSCRIBE ENID VÁZQUEZ @ENIDVAZQUEZPA BRIEFLY

Pricing for generic Truvada may be viewed as grossly and Atripla insufficient for keeping a Generic Truvada patient on therapy. It can There’s more than one way to be especially difficult for a now available in U.S. skin a price cut. For the new patient that always had a $0 generic of Truvada, the devil copay to be told they must may be in the co-pay. suddenly pay a much larger A generic version of the medication Truvada, which is used In a message to fellow copay for a generic version. for both HIV treatment and PrEP, is now—finally—available pharmacy staff at the phar- Unfortunately, patients often in the U.S. macies of Indiana University do not learn of this change Health, Matthew Reed, CPhT, until requesting a refill giving The generic medication pay those prices, unless laid out some reasons why them little time to financially from Teva Pharmaceuticals paying entirely out-of- going generic may end up plan for such a large change.” USA was actually approved pocket (in the absence of costing more. “In talking about generic by the U.S. Food and Drug insurance or other financial “Truvada and Atripla’s cur- releases of brand specialty Administration (FDA) in 2017, assistance). “The price rent copay card (from Gilead) medications, cost and copay but the Gilead Sciences won’t change too much until does not have a monthly cap assistance offered is a major patent on Truvada prevented other generic manufacturers on the amount of assistance concern” Reed said. “This its availability as a generic. or formulations become (there is an annual cap of is a great example of how a Then Gilead announced it available to increase $7,200 and $6,000 respec- change to generic may cost was relinquishing its Truvada competition in the market,” tively),” wrote Reed, a certi- the patient with commercial patent a year early, in 2020. said Dr. Farmer. fied pharmacy technician and insurance much more than Gilead made an agreement According to Teva’s Patient Care Coordinator. “A what they paid for the brand with Teva, allowing the announcement, “Actual costs patient with a high deductible name.” generic version of tenofovir to individual patients and plan will typically have a cost disoproxil fumarate plus providers are anticipated to of about $1,600 and $2,400 Generic Truvada cost sharing emtricitabine (TDF/FTC) be lower than WAC because per month when their plan to be made commercially WAC does not account resets until the deductible A reminder: the U.S. available this year. for additional rebates and is met. With no monthly cap Preventative Services Task Teva reported that the discounts that may apply. on assistance, the patient Force (USPSTF) made a generic Truvada tablets “are Savings on out-of-pocket is typically able to continue recommendation in June expected to be available costs may vary depending therapy without any out-of- 2019 limiting a patient’s through retailers and on the patient’s insurance pocket expense.” cost-sharing expense for wholesalers at a Wholesale payer and eligibility “The new generics being PrEP that is slated to start Acquisition Cost (WAC) of for participation in the released,” Reed continued, in 2021. Private insurance $48.51.” assistance program.” “also have copay assistance plans that are not grand- A bottle of 30 tablets (a Teva also made available programs setup for patients, fathered in must cover month’s supply) would be a generic form of Atripla, but but the programs have a PrEP without cost-sharing $1,455.30. This compares that single-tablet regimen is monthly cap. The copay card payments, such as co-pays, to $1,755.30 for the no longer recommended for for generic Truvada will pay a from patients. Health Affairs wholesale acquisition cost first-time HIV therapy. The maximum of $600 per month. has more information: for Truvada and the average Teva wholesale acquisition The copay card for generic healthaffairs.org/do/10.1377/ wholesale price (AWP) for cost is $78.86 per tablet, or Atripla will pay a maximum hblog20190613.596797/full. Truvada of $2,210.74 per $2,365.80 for a bottle of of $750 per month. Since month, according to Eric 30. Atripla’s AWP, according the generic versions are New cure potential Farmer, PharmD, at Indiana to the PA drug guide, is similarly priced to the brand, University Health LifeCare $3,583.65/month. a patient with a high deduct- A research group looking into Clinic, and pharmacist for the ible plan may have an out- HIV cure reported a new way Positively Aware HIV Drug GO TO TevaHIVgenerics. of-pocket expense greater that it may happen. Guide. Different clinics and com. Our HIV Drug Guide than $800 per month until Cure research has long hospital systems negotiate is at positivelyaware.com/ their deductible is met even looked at elite controllers, with pharmaceuticals hiv-drug-guide. after the copay assistance people living with HIV who based on the WAC and AWP card. In today’s insurance continue to have undetect-

JOHN GRESSJOHN prices. Patients will not environment, these programs able viral load without

POSITIVELYAWARE.COM/SUBSCRIBE | NOV+DEC 2020 7 BRIEFLY

treatment. Cure research time as a once-daily regimen. also looks at the HIV reser- For the first 24 weeks, study voir, places in the body where participants also took 3TC the virus hides. Once HIV (brand name Epivir) before treatment dominates the the regimen was simplified virus, HIV may lie dormant in from three drugs to two. these sites ready to continue The islatravir regimen was battling against the body. compared to Delstrigo, a sin- Ready to rumble, so to speak. gle-tablet regimen containing Now, a group reports new doravirine plus lamivudine information on reservoir and tenofovir DF. sites. Elite controllers appear All participants were tak- to have HIV in areas of these ing HIV medication for the sites different from people first time (treatment-naïve). who have controlled the virus Islatravir will move for- long-term using medication. ward in research at a 0.75 mg The team said this different dose for the 90 participants configuration points to the taking it. The three islatravir importance of the quality of groups had an average of reservoir sites, not just the 81.1% of participants who had quantity of the virus there. an undetectable viral load Understanding how HIV (fewer than 50 copies). This functions in elite controllers compared to 80.6% for the 31 raises hopes of helping to individuals taking Delstrigo. control the virus in others. The average for the islatravir Chenyang Jiang, of groups was dragged down the Raygon Institute of by the discontinuation rate Massachusetts General among those receiving the Hospital, MIT, and Harvard, highest test dose, 2.25 mg. and colleagues published A new oral HIV compound, their study in the August 26 MK-8507, is moving forward issue of Nature, but their Dovato shows promise into Phase 2 study in com- highly technical report was bination with islatravir. The told in a more accessible two-drug regimen will be story format the same day for rapid start taken once weekly. MK-8507 by The New York Times. “Rapid start” HIV therapy has become the standard of is a non-nucleoside reverse READ “A Woman May Have care. Also called “test and treat,” it means putting peo- transcriptase inhibitor Been Cured of H.I.V. with- ple on HIV treatment within two weeks after diagnosis. (NNRTI). out Medical Treatment” at But for rapid start, not all HIV drugs are equal. The drug studies were nytimes.com/2020/08/26/ presented as oral and poster health/hiv-cure.html. A recently reported study showed that the HIV medi- presentations at the virtual cation Dovato (dolutegravir/lamivudine) may be effective 2020 International Congress Islatravir continues for rapid initiation. on Drug Therapy in HIV to show promise Individuals were put on Dovato within 14 days of their Infection, in Glasgow (HIV diagnosis, and before test results for hepatitis B, renal Glasgow 2020) in October. Merck & Co. reported that function, and drug resistance were back. 96-week results of its All people who are newly diagnosed should be tested U=U: Spread the word investigational drug isla- for hepatitis B and C. They should also know their hep travir are “consistent” with B status before starting some HIV drugs that can also “For ART [antiretroviral ther- promising data seen at 48 treat hepatitis B, as lamivudine does. Otherwise, they apy], the science is strong weeks. Islatravir belongs to may experience a flare-up of their hep B when stopping or and clear; the data show a new HIV drug class that switching their HIV treatment. that the effectiveness of has not yet hit the market: The STAT study found that for the five individuals who ART with viral suppression nucleoside reverse transcrip- had hepatitis B at baseline, all had undetectable viral is estimated to be 100% for tase translocation inhibitors load (less than 50) at the six-month mark. They had been preventing sexual transmis- (NRTTIs). The company also successfully switched to other HIV therapy. HIV treatment sion of HIV. In other words, reported good early results needs to include two medications that work against hepa- for persons taking ART as for a new once-a-week oral titis B for those who are co-infected with HBV and HIV. prescribed and achieving and HIV compound. For the participants in the clinical trial with avail- maintaining viral suppression, Islatravir was given with able data, 92% (102) had undetectable viral load. ViiV there is effectively no risk of doravirine, a drug that is Healthcare reported its findings at ACTHIV 2020 (the transmitting HIV through sex.” already available under the American Conference for the Treatment of HIV), held vir- So wrote Eugene McCray, brand name Pifeltro. The two tually in August. The study is continuing out to 48 weeks. MD, director of the Division

meds were given at the same of HIV/AIDS Prevention of ISTOCKPHOTO

8 NOV+DEC 2020 | POSITIVELYAWARE.COM/SUBSCRIBE the National Center for HIV/ One of the men acquired HIV man, who is so protective of Opioid agonists AIDS, Viral Hepatitis, STD & after stopping PrEP following his confidentiality that he fills in lock-up during COVID TB Prevention, at the Centers his vacation. James E. Egan, his HIV-related prescriptions for Disease Control and MPH, PhD, and colleagues at a different pharmacy chain A survey of opioid agonist Prevention (CDC). Dr. McCray published their findings in from where he gets his other treatment (OAT) programs reached out to health depart- the August 15 issue of JAIDS. medications, was shocked to for incarcerated individuals ments and community orga- receive the same mailing.” found that half had chal- nizations in a July letter, after My Fabulous Disease As a result of the incidents, lenges maintaining their staff CDC updated its web page on wins GLAAD award the two men are being rep- under the COVID-19 crisis. On “Effectiveness of Prevention resented by the law project the other hand, most—more Strategies to Reduce the Risk Blogger Mark S. King and the law firms of Berger than 80%—saw early release of Acquiring or Transmitting received the 2020 GLAAD Montague PC and Langer given to OAT participants. HIV.” The page is full of Media Award for Outstanding Grogan & Diver PC in a class A research team from research information, walk- Blog for My Fabulous Disease. action lawsuit against Gilead, Johns Hopkins University ing you through the scientific The blog’s introduction: “I’m the sender of the envelopes. used an online survey in evidence. “I am writing to an HIV-positive gay man in The two men had signed May of 19 institutions that encourage you to continue recovery from drug addiction. up for the company’s were providing maintenance your work to spread the word What’s not to love?” Advancing Access Program, treatment with methadone about the power of viral “I accept this honor with which offers discounts for or buprenorphine around the suppression to improve the great humility and a lot of Gilead’s PrEP medications. time COVID-19 hit the U.S. health of people with HIV and sashaying around my living It appears that the envelopes Sixteen (84%) responded: 12 to prevent the sexual trans- room,” King wrote. “Meaning were meant for providers, jails and four prisons. mission of HIV,” Dr. McCray more sashaying than usual. not people in the program. A report on the wrote. “This information is “I have been living with important and has the power HIV for more than 35 years. to change lives.” GO TO bit.ly/ Long-term survivors are the EffectivenessofPrevention wounded elders of our tribe. Strategies. We are the storytellers of an epic tale of courage and PrEP on vacation humanity. I am so gratified to know that GLAAD has been How’s this for innovative use listening,” King posted on of PrEP? Give people the HIV July 30, the day of the awards. prevention pill before they King also received the go on vacation. Although LGBT Journalist of the one pill a day keeps the HIV Year 2020 award from away, that’s not always so the Association of LGBTQ easy to do. So, a group of Journalists (NLGJA). The researchers put 54 men who association also recognized have sex with men (MSM) him with the Excellence in on the prevention pill before Blogging Award for 2014, the guys went on vacation. 2017, and again this year. Of these, 48 completed a GLAAD was founded in three-month visit afterwards. 1985 in response to inflam- Three-quarters of the men matory coverage of HIV and PAUL STALBAUM (ABOVE, IN WHITE T-SHIRT) reported having condom- AIDS. less sex during the vaca- Damn you, COVID-19, for ‘Poz Cruise’ founder Paul Stalbaum dies tion—something they had making the fabulous Mark S. done previously—and a third King’s moment virtual. How Paul Stalbaum, the travel agency owner who founded a reported having recreational great the tall, handsome yearly cruise voyage specifically for people living with HIV, drug use. The research team redhead would have looked died in August after years of struggling with cancer. called the strategy “Epi- sashaying in the aisles. The HIV Cruise Retreat, better known as “The Poz PrEP,” for episodic use. The Cruise,” provided education and entertainment, but more majority of the men, however, Gilead privacy lawsuit importantly, the chance to create community with peo- continued to use PrEP after ple around the country. Paul negotiated the best prices he their vacation—and 94% of “An Alabama man was morti- could for the cruise and also made sure that scholarships them had prevention drug fied when an envelope for were available to help people attend it. levels consistent with daily him with the return address Paul has a special place in my heart for being one of use. “Many participants felt HIV Prevention Team in bold the few people to reach out to Briefly, wanting to let peo- the experience of initiating red lettering turned up in ple all over the country hear about the cruise. I never met PrEP while on vacation could his workplace mailroom,” Paul, but he was just loving in all his communications and be a means for transition reported the newsletter of wanted to make the world a better place. Happy heavenly to long-term PrEP use,” the the AIDS Law Project of travels, Paul. team noted in its conclusions. Pennsylvania. “An Indiana

POSITIVELYAWARE.COM/SUBSCRIBE | NOV+DEC 2020 9 BRIEFLY

survey results in Addiction atforum.com/2020/09/covid- emergency rooms,” reported available to address the HIV Treatment Forum called 19-threatens-incarcerated- the Latino Commission on pandemic as we are dealing the downsizing “a matter loss-oat-treatment. See AIDS as the agency present- with another one,” organizers of concern, because OAT is also “Five Ways the ed a webinar, “Mental Health reported. “While we continue known to reduce mortality Criminal Justice System and Substance Use: Realities maintaining social distance and improve treatment out- Could Slow the Pandemic” and Challenges During and following preventive comes.” The article quoted from the Prison Policy Uncertain Times,” June measures to respond to the the study team itself as Initiative at prisonpolicy. 11 on its YouTube channel. COVID-19 pandemic, we ask noting that, “By threatening org/blog/2020/03/27/ The presentation includes everyone to do their part in access to life-saving medica- slowpandemic. an overview of challenges the fight against HIV: take tions, the COVID-19 pandem- seen by the Substance the HIV test, learn about HIV ic poses an additional threat Mental health Abuse and Mental Health and risk factors, consider to an already vulnerable and and substance use Services Administration using PrEP and condoms highly marginalized popula- (SAMHSA), and a presenta- as prevention approaches, tion.” The team also noted “People with substance use tion from the Harm Reduction and stay adherent to HIV that jails and prisons are “at disorders often have long Coalition. GO TO bit.ly/ treatment to become virally the epicenter of the [COVID- histories of unmitigated LatinoAIDSwebinar2020-06-11. suppressed or undetectable.… 19] pandemic in the United mental illness and trauma. We see the impact of stigma, States.” With very little access to the National Latinx homophobia, transphobia, The study by Sachini same treatment and support AIDS Awareness Day and xenophobia as major bar- Bandara, PhD, and colleagues than their white counterparts, riers in accessing HIV testing, was published online Black and brown people with “Ending HIV is at your finger- prevention, treatment, and August 27 ahead of print substance use disorders tips” was the theme of this care in our community.” In in the Journal of Addiction are especially vulnerable year’s National Latinx AIDS 2018, more than one in four Medicine. READ the Addiction to cycling in and out of cor- Awareness Day. The theme new HIV diagnoses (27%) Treatment Forum report at rectional facilities and “focuses on the tools already occurred in Latinx, although they represent only 18% of the national population. ‘When Dogs Heal’ GO TO nlaad.org. Healing takes more than medicine. Sometimes it takes love. Read true tales of exquisite con- AIDS.gov is now HIV.gov nection in the new book, When Dogs Heal: Powerful Stories of People Living with HIV and “The U.S. Department of the Dogs That Saved Them. A portion of the Health and Human Services proceeds goes to Fred Says, a Chicago-based [HHS] today officially organization that raises money for teens living changed the name of AIDS. with HIV. Due out early next year, look for gov, the federal government’s pre-sales of the book on World AIDS Day leading source for informa- (December 1) at whendogsheal.org. tion about HIV, to HIV.gov,” the agency reported June 5. “The announcement coincides with the 36th anniversary SAMUS STARBODY of the Centers for Disease AND ZEUS Control and Prevention’s first report of the initial cases of what would become known as AIDS. The name change reflects major scientific advances that have trans- formed an almost universally fatal disease to a condition that, if diagnosed and treated early and continuously, can be controlled and prevented from progressing to AIDS. In fact, there are more people living with HIV in the United States now than people living with AIDS.” GO TO hhs. gov/about/news/2017/06/05/ more-name-change-aidsgov- becomes-hivgov.html to read the announcement.

10 NOV+DEC 2020 | POSITIVELYAWARE.COM/SUBSCRIBE WHEN DOGS HEAL: © 2021 BY ZEST BOOKS™ • LANDS: COURTESY BOB LEDERER o served as its science editor, and her work also also work her and editor, science its as served serious condition left her with a strong drive drive astrong with her left condition serious o at community meetings about the things that that things the about meetings community at anything that could help her survive and and survive her help could that anything appeared in in appeared at having beaten that prediction. But her her But prediction. that beaten having at were parents Her diabetes.” “childhood as directly to her advice and counsel. She wrote wrote She counsel. and advice her to directly munity with an online memorial celebration with munity medications. Lark spoke with individuals and and individuals with spoke Lark medications. pies for people with HIV/AIDS, died of cancer cancer of HIV/AIDS, died with people for pies regularly for for regularly HIV community. At the time, there were no no were there time, the At community. HIV Lark Lands, who wrote about alternative thera alternative about wrote who Lands, Lark turned her knowledge and skills to helping the the helping to skills and knowledge her turned to learn about metabolic processes and and processes metabolic about learn to the decades, many attributed their survival survival their attributed many decades, the com the in colleagues and friends her by be healthy. Then AIDS came along and she she and along came AIDS Then healthy. be told she would die by age 12. She laughed laughed She 12. age by die would she told Remembering Lands Lark n November 2019, but was remembered was remembered n but November 2019, f her life on her birthday her on life f her Lark had Type I diabetes, also known known also Type Idiabetes, had Lark THE REUNION PROJECT THE LONG-TERM SURVIVORSLONG-TERM OF HIV What 60 doyou turning give along-term survivor WEDNESDAY, DECEMBER16 POSITIVELY AWAREPOSITIVELY POZ magazine for many years, and and years, many for magazine A CELEBRATION OF who wasn’twho to supposed make to it 30? VIRTUALLY HAPPENING , September 5. Over 5. Over , September . BENEFITING - - could be done to ease symptoms of disease disease of symptoms ease to done be could of treatment as well. Later in life, she founded founded she life, in Later well. as treatment of she rarely received compensation. Later, when compensation. she rarely received swallow a handful of supplements with one one with supplements of ahandful swallow glass of water. Her vitality was unbelievable. unbelievable. was vitality Her water. of glass and strengthen the body. Although she she Although body. the strengthen and a project in South Africa to help orphans and and orphans help to Africa South in a project devoted her life work to the HIV community, community, HIV the to work life her devoted day or night her phone rang from longtime Cassin, said Gregg Cassin of Shanti Project Project Shanti of Cassin Gregg said Cassin, person I called with every question and fear I fear and question every with Icalled person HIV medications became available, she turned turned she available, became medications HIV Medicine, and Miracles. Miracles. and Medicine, impoverished families. Lark continued to continued impoverished tend families. Lark in San Francisco, and co-founder of AIDS, AIDS, of co-founder and Francisco, San in friends with HIV or a complete stranger who who stranger acomplete or HIV with friends could she that me told once and health her to her attention to dealing with the side effects effects side the with dealing to attention her had been given her number,” said Gregg Gregg number,” said her given been had time, …Any HIV/AIDS my diagnosis. about had “For decades my friend Lark Lands was the the was Lands Lark friend my decades “For Rest in power, Lark Lands. Lands. Lark power, in Rest WEDNESDAY, DECEMBER 16 VIRTUALLY HAPPENING POSITIVELYAWARE.COM /SUBSCRIBE | NOV+DEC 2020 2020 |NOV+DEC

11 Do not take DELSTRIGO if you have ever had an allergic WHAT IS DELSTRIGO? reaction to lamivudine.

DELSTRIGO is a complete, one-pill prescription HIV New or worse kidney problems, including kidney failure, medicine used to treat HIV-1 infection in adults who can happen while you are taking DELSTRIGO. Your have not received HIV-1 medicines in the past, or to doctor should do blood and urine tests to check your replace their current HIV-1 medicines for people whose kidneys. If you develop new or worse kidney problems, healthcare provider determines that they meet certain your doctor may tell you to stop taking DELSTRIGO. requirements. HIV-1 is the virus that causes Acquired Some people who take DELSTRIGO experience bone Immune De ciency Syndrome (AIDS). problems such as pain, softening, or thinning of the bone. Tell your doctor if you have any of the following IMPORTANT SAFETY symptoms during treatment with DELSTRIGO: bone pain that does not go away or worsening bone pain; pain in INFORMATION your arms, legs, hands or feet; broken bones; or muscle pain or weakness. Worsening of hepatitis B virus infection (HBV). If you have both Human Immunode ciency Virus-1 Changes in your immune system (Immune Reconstitution (HIV-1) and HBV and stop taking DELSTRIGO, your HBV Syndrome) can happen when you start taking HIV-1 may suddenly get worse. Do not stop taking DELSTRIGO medicines. Your immune system may get stronger and without rst talking to your doctor, as they will need to begin to ght infections that have been hidden in your monitor your health. Your doctor should test you for HBV body for a long time. Tell your doctor right away if you infection before you start treatment with DELSTRIGO. start having new symptoms after starting your HIV-1 medicine. Do not take DELSTRIGO if you are currently taking any YOU ALREADY THINK of the following medicines: The most common side effects of DELSTRIGO include: dizziness, nausea, and abnormal dreams. • carbamazepine • rifampin OUTSIDE THE BOX, • oxcarbazepine • rifapentine These are not all the possible side effects of DELSTRIGO. SO THINK DIFFERENTLY ABOUT • phenobarbital • mitotane For more information, ask your doctor or pharmacist. YOUR HIV TREATMENT. • phenytoin • St. John’s wort HIV-positive model • enzalutamide Please see additional Important Safety GETTING TO UNDETECTABLE IS IMPORTANT—it means the level of HIV in your blood is so low, Ask your doctor or pharmacist if you are not sure if your Information on next page. lab tests can't even see it. But there’s still more to consider, like drug-drug interactions and side effects. Ask your medicine is one that is listed above. If you have taken healthcare provider about DELSTRIGO, a once-daily treatment option for HIV-1. After all, you write your own story and any of the medicines in the past 4 weeks, talk to your undetectable is just the beginning. doctor or pharmacist before starting DELSTRIGO. Tell your healthcare provider about all the medicines IMPORTANT SAFETY you take, including prescription and over-the-counter INFORMATION (CONT'D) medicines, vitamins, and herbal supplements. Some medicines interact with DELSTRIGO. Before starting DELSTRIGO, tell your doctor about all your Keep a list of your medicines to show your doctor and medical conditions, including if you have hepatitis B virus pharmacist. Tell your doctor if you have taken rifabutin in infection; kidney problems; bone problems, including a the past 4 weeks. Do not start taking a new medicine history of bone fractures; are pregnant or plan to become without telling your doctor. Your doctor can tell you if pregnant; or are breastfeeding or plan to breastfeed. It it is safe to take DELSTRIGO with those other medicines. is not known if DELSTRIGO can harm your unborn baby. Do not breastfeed if you take DELSTRIGO. Women with You are encouraged to report negative side effects HIV should not breastfeed because their babies could be of prescription drugs to the FDA. Visit www.fda.gov/ infected with HIV through their breast milk. medwatch or call FDA at 1-800-FDA-1088.

Please read the adjacent Patient Product Information for DELSTRIGO and discuss it with your doctor. Learn more at Having trouble paying for your Merck medicine? Merck may be able to help. Visit merckhelps.com. delstrigo.com

Copyright © 2020 Merck Sharp & Dohme Corp., a subsidiary of Merck & Co., Inc. All rights reserved. US-DOR-00666 07/20 Do not take DELSTRIGO if you have ever had an allergic WHAT IS DELSTRIGO? reaction to lamivudine.

Copyright © 2020 Merck Sharp & Dohme Corp., a subsidiary of Merck & Co., Inc. All rights reserved. US-DOR-00666 07/20 Patient Information Pregnancy Registry: There is a pregnancy registry • See “What is the most important information DELSTRIGO™ (del-STREE-go) for people who take DELSTRIGO during pregnancy. I should know about DELSTRIGO?” (doravirine, lamivudine, and tenofovir The purpose of this registry is to collect information • New or worse kidney problems, including disoproxil fumarate) tablets about the health of you and your baby. Talk to your kidney failure. Your doctor should do blood and What is the most important information I doctor about how you can take part in this registry. urine tests to check your kidneys before you start should know about DELSTRIGO? • are breastfeeding or plan to breastfeed. Do not and during treatment with DELSTRIGO. Your doctor breastfeed if you take DELSTRIGO. may tell you to stop taking DELSTRIGO if you DELSTRIGO can cause serious side effects, develop new or worse kidney problems. including: o You should not breastfeed if you have HIV-1 because of the risk of passing HIV-1 to your baby. • Bone problems can happen in some people who Worsening of hepatitis B virus infection (HBV). take DELSTRIGO. Bone problems include bone pain, If you have Human Immunodeficiency Virus-1 (HIV-1) Two of the medicines in DELSTRIGO (lamivudine o softening or thinning (which may lead to fractures). and HBV infection, your HBV infection may get worse and tenofovir) can pass into your breast milk. It is Your doctor may need to do tests to check your (flare-up) if you stop taking DELSTRIGO. A “flare-up” not known if doravirine can pass into your breast bones. is when your HBV infection suddenly returns in a milk. worse way than before. Your doctor will test you o Talk with your doctor about the best way to feed Tell your doctor if you have any of the following for HBV infection before you start treatment with your baby. symptoms during treatment with DELSTRIGO: bone pain that does not go away or worsening bone DELSTRIGO. Tell your doctor about all the medicines you pain, pain in your arms, legs, hands or feet, broken • Do not run out of DELSTRIGO. Refill your take, including prescription and over-the-counter (fractured) bones or muscle pain or weakness. These prescription or talk to your doctor before your medicines, vitamins, and herbal supplements. may be symptoms of a bone or kidney problem. DELSTRIGO is all gone. • Some medicines interact with DELSTRIGO. • Changes in your immune system (Immune • Do not stop taking DELSTRIGO without Keep a list of your medicines to show your Reconstitution Syndrome) can happen when you first talking to your doctor. If you stop taking doctor and pharmacist. start taking HIV-1 medicines. Your immune system DELSTRIGO, your doctor will need to check your • Tell your doctor if you have taken rifabutin in the may get stronger and begin to fight infections that health often and do blood tests regularly for past 4 weeks. have been hidden in your body for a long time. Tell several months to check your liver. Tell your doctor • You can ask your doctor or pharmacist for a list of your doctor right away if you start having any new about any new or unusual symptoms you may have medicines that interact with DELSTRIGO. symptoms after starting your HIV-1 medicine. after you stop taking DELSTRIGO. • Do not start taking a new medicine without The most common side effects of DELSTRIGO include For more information about side effects, see “What telling your doctor. Your doctor can tell you if it is dizziness, nausea, and abnormal dreams. are the possible side effects of DELSTRIGO?” safe to take DELSTRIGO with other medicines. These are not all the possible side effects of What is DELSTRIGO? How should I take DELSTRIGO? DELSTRIGO. DELSTRIGO is a prescription medicine that is used • Take DELSTRIGO every day exactly as your doctor Call your doctor for medical advice about side effects. without other HIV-1 medicines to treat HIV-1 infection tells you to take it. You may report side effects to FDA at 1-800-FDA- in adults: • Take DELSTRIGO 1 time each day, at about the same 1088. • who have not received HIV-1 medicines in the past, time every day. How should I store DELSTRIGO? or • DELSTRIGO is usually taken by itself (without other • Store DELSTRIGO tablets at room temperature • to replace their current HIV-1 medicines for people HIV-1 medicines). between 68°F to 77°F (20°C to 25°C). whose healthcare provider determines that they • If you take the medicine rifabutin during treatment • Keep DELSTRIGO in the original bottle. meet certain requirements. with DELSTRIGO, your doctor will also prescribe • Do not take the tablets out of the bottle to store in HIV-1 is the virus that causes Acquired Immune an additional dose of doravirine for you. You may another container, such as a pill box. Deficiency Syndrome (AIDS). not have enough doravirine in your blood if you • Keep the bottle tightly closed to protect DELSTRIGO DELSTRIGO contains the prescription medicines take rifabutin during treatment with DELSTRIGO. from moisture. doravirine, lamivudine and tenofovir disoproxil Carefully follow your doctor’s instructions about fumarate. when to take doravirine and how much to take. This • The DELSTRIGO bottle contains desiccants to help keep your medicine dry (protect it from moisture). It is not known if DELSTRIGO is safe and effective in is usually 1 tablet of doravirine about 12 hours after Keep the desiccants in the bottle. Do not eat the children under 18 years of age. your last dose of DELSTRIGO. desiccants. Who should not take DELSTRIGO? • Take DELSTRIGO with or without food. Keep DELSTRIGO and all medicines out of the • Do not change your dose or stop taking DELSTRIGO Do not take DELSTRIGO if you take any of the reach of children. following medicines: without talking to your doctor. Stay under a doctor’s care when taking DELSTRIGO. General information about the safe and • carbamazepine • rifampin effective use of DELSTRIGO. • oxcarbazepine • rifapentine • It is important that you do not miss or skip doses of Medicines are sometimes prescribed for purposes • phenobarbital • mitotane DELSTRIGO. other than those listed in the Patient Information • phenytoin • St. John’s wort • If you miss a dose of DELSTRIGO, take it as soon as leaflet. Do not use DELSTRIGO for a condition for • enzalutamide you remember. If it is almost time for your next dose, which it was not prescribed. Do not give DELSTRIGO skip the missed dose and take the next dose at your Ask your doctor or pharmacist if you are not sure if to other people, even if they have the same symptoms regular time. Do not take 2 doses of DELSTRIGO at your medicine is one that is listed above. If you have that you have. It may harm them. You can ask the same time. taken any of the medicines in the past 4 weeks, talk your pharmacist or doctor for information about to your doctor or pharmacist before starting treatment • If you have any questions, call your doctor or DELSTRIGO that is written for healthcare professionals. with DELSTRIGO. pharmacist. What are the ingredients in DELSTRIGO? Do not take DELSTRIGO if you have ever had • If you take too much DELSTRIGO, call your doctor Active ingredients: doravirine, lamivudine, and an allergic reaction to lamivudine. or go to the nearest hospital emergency room right tenofovir disoproxil fumarate. What should I tell my doctor before treatment away. Inactive ingredients: colloidal silicon dioxide, with DELSTRIGO? • When your DELSTRIGO supply starts to run low, croscarmellose sodium, hypromellose acetate get more from your doctor or pharmacy. This is very Before treatment with DELSTRIGO, tell your succinate, magnesium stearate, microcrystalline important because the amount of virus in your blood doctor about all of your medical conditions, cellulose, and sodium stearyl fumarate. The tablet may increase if the medicine is stopped for even including if you: film coating contains hypromellose, iron oxide yellow, a short time. The virus may develop resistance to • have hepatitis B virus infection lactose monohydrate, titanium dioxide, and triacetin. DELSTRIGO and become harder to treat. • have kidney problems The coated tablets are polished with carnauba wax. What are the possible side effects of • have bone problems, including a history of bone DELSTRIGO? usppi-mk1439a-t-1909r001 fractures Revised: 09/2019 DELSTRIGO may cause serious side effects, Copyright © 2020 Merck Sharp & Dohme Corp., • are pregnant or plan to become pregnant. It is not including: known if DELSTRIGO can harm your unborn baby. a subsidiary of Merck & Co., Inc. All rights reserved. Tell your doctor if you become pregnant during US-DOR-00666 07/20 treatment with DELSTRIGO. Breaking the Finding a way out of addiction —with a road map CYCLE BY JEFF BERRY

“I love what I do; it’s crazy as hell. All my family and friends ticking clock that we know has to are like, Aaahhh, we don’t know what she does.” be done in 20 minutes can actually be used with some efficacy. And She is Neva Chauppette, PsyD, bathhouse. And I said, where have most of my patients are happy to a licensed psychologist in California, you been, I’ve been looking for you have me on the phone, because and what she’s done is treat over for two days. ‘I was doing quaran- they’re embarrassed about some 1,500 patients with HIV who have tina.’ Meaning, you know, party and of the stuff they did; you know, all multiple co-occurring conditions play [PNP], but mostly with meth. the guilt and shame. I just cut to such as addiction, a history of Quaran-tina is just their word play the chase, tell them what I’m going trauma, or other psychiatric diagno- with PNP plus the quarantine.” to say before I say it, so we have a ses. She’s gritty, brassy, and doesn’t Another form of addiction prep call, before I get on the phone hold back on telling you exactly burdening our community is sex with the doc and them. So they can what she thinks—and in the most addiction, she says. “This is a more trust me. I’ve got the facts, I’m not simple and sometimes graphic difficult form of addiction to treat going to blindside them.” terms. as we possess the ‘drug’ 24/7—it She works closely with their HIV “Normally what I consider to be is free, and often does not even docs, and is sometimes on those my area of expertise is addiction in require other human contact. Your calls as well. “Usually, before COVID, its multiple forms: Food, gambling, hand can be a form of addiction— I would meet them there and go in pot, porn, pills, sex…the whole meaning masturbation.” with them to see their HIV provider. gamut!” Chauppette says that you can’t Because a lot of them get in there Chauppette says addiction was really work in addiction compe- and get anxious. They don’t want to on the rise among the general popu- tently unless you understand other disappoint the provider. They don’t lation as well as in people living with co-occurring disorders, “especially want to say, ‘Look, I slipped again, HIV (PLHIV), even before COVID-19. PTSD, bi-polarity, ADHD, some and had a PNP event, and I’m think- “In Los Angeles, methamphetamine schizophrenia, and some personal- ing maybe I should get checked remains the nightmare drug of ity disorders.” for everything, STD-wise.’ Or, ‘My choice for many of my HIV-positive “Historically, mental health folks partner wants to go on PEP. He’s patients. It is also the drug that has like me don’t interact with the treat- out in the waiting room; can you brought many of my patients to the ing psychiatrist of the patient that help him get on PEP today, because world of HIV due to the hypersexual- we share, which is insane to me. So we hooked up last night?’ ity and wild abandonment associ- when my patients have their video “So it’s a lot of what I call therapy- ated with the drug’s use.” Zoom conference call with their plus case management that I do. “I was talking with someone last psychiatrist, I’m usually on that And I try to do integrated work…I night who had come home from call. Because I’m going to be able think it’s unethical to work as a not the bathhouse, because those to articulate what is really going solo provider without talking to the

ISTOCKPHOTO are closed, but the underground on, easier and quicker, so that that major players who are also treating

POSITIVELYAWARE.COM/SUBSCRIBE | NOV+DEC 2020 15 this patient. It’s more work, but I of change” model when talking and process that takes significant time, get better outcomes. working with patients, “to find out attention, and a lot of trial and error. “My patients are burdened with where they really are, as opposed I refer to my clients as patients as I significant addiction—multiple to where I would like them to be.” want them to understand that we entities in an obsessive-compulsive According to Elizabeth Hartney, will both need to be patient in our way—and they also have concurrent BSc, MSc, MD, PhD, the “stages work together. I am also a propo- psych [issues], or they’re chronic of change” or “transtheoretical” nent of addiction medication. I have relapsers, and no one can figure it model is a way of describing the seen my patient’s chances of suc- out. ‘What the hell, he seems to be process by which people overcome cess increase significantly when we trying, authentically, to stop using, addiction, and “provides a useful add to their recovery program MAT or slow his roll, but he just can’t way of understanding the process (medication-assisted therapy). Some get it.’ We’ll then try to figure out of change and gives a structure to examples are Suboxone, Vivitrol, what co-occurring psych is going how changes in addictive behaviors and Campral. When a patient is in on, because it’s almost always can be encouraged and managed.” early recovery from addiction, and there…missed, over and over and There are variations on the model especially when it co-occurs with over again. And then I determine but it is essentially made up of four other major psychiatric disorders, whether or not I think at this level stages: Precontemplation, contem- the addition of MAT offers them a of severity of addiction whether or plation, preparation, and action. brain-based form of support.” not they should go into an inpatient (Maintenance and relapse are also As a self-identified member of setting, to just put some geography sometimes included as additional the LGBTQ community, Chauppette between the body and the mind and stages.) says that early in her career she the dealer and the hookups and the Chauppette says she finds the felt a loyalty to her “brothers and cell phone. Referrals come from evidence-based treatment that is sisters to help them in our fight to different directions. Drug treatment appropriate for the level of change live dignified, authentic lives.” While programs out here will sometimes where her patients are at, and completing her doctorate in Los call me. They’ll hire me and say, meets them there to develop a rap- Angeles, the HIV epidemic raged. ‘We’ve got a chronic relapse. We love port and to try to minimize “wreck- “I knew I always wanted to work this woman—or this guy, whoever age accumulation,” while she tries with the diseases of our time—HIV, it is—but we’ve done everything we helping them “move further down HCV, addiction. My brothers were know to do. Can you take a look at the chain of behavior change.” dying horrible deaths, many alone, what we’re missing?’ And usually it’s “One of the mistakes we make afraid, dealing with dying and death. major psych. as providers, I think, is that we For some, their own internalized “I’ve seen thousands of patients overshoot readiness. Patient homophobia was being fueled by with serious psych, usually mul- readiness is usually much less, no ignorant and shame-based state- tiple psych. ADHD, PTSD, bipolar matter the problem—HIV, hep C, ments like ‘HIV is a message from disorder are the common three. addiction, bipolar disorder. They’re God that your sexual orientation is And then of course HIV and hep C, usually not at the place yet where the reason you have HIV and are which in my world is the least of the they are ready to see a psychiatrist, suffering.’ ‘Leading a gay lifestyle problems. Many of them got to the who of course is gay-friendly, HIV- is immoral.’ So, during my doctoral world of HIV behind undiagnosed knowledgeable, understands addic- work I started treating HIV-positive and untreated psych. And when I tion—which we think is yes, yes, heterosexual and gay/bisexual men, say psych, I mean, addiction is a and yes, but is usually no, no, and and trans women. For most, if not psychiatric disorder. Addiction can no, that they have training in that all my patients, even before their run solo by itself, but almost always area. So the stages of change model HIV-positive status, psychological there is an additional co-occurring is kind of like a navigator for me… suffering had been enormous and psychiatric disorder, like the ones and I teach it to my patients. They was now simply devastating.” I’ve mentioned.” like to use it. I’ll ask, what stage of It’s possible you can have all change do you think you’re in for the The LGBTQ community is exhausted three, says Chauppette, but it’s nicotine dependence? And they’ll but still fighting, says Chauppette. treatable. “You just have to have a say, ‘Oh, I’m in pre-contemplation,’ “Our heavily fought for gains are provider who gets you, gets your which means don’t talk to me about again in jeopardy. There is a community. One of the blessings I it, I don’t want to hear about it, I’m push to move us back into the have is that I’m part of the LGBTQ gonna smoke on my deathbed. All the closet or require us to just settle community, so I’m already in the tools that I use, I try to teach them for being ‘tolerated.’ We are not door so to speak, and I know the cul- how they can use them…it gives having it ever again, so we soldier ture. Even though I’m not male, I’ve them a roadmap, because they feel on. We are indeed strong given seen so many gay male patients that lost most of the time. the minority stressors we have I feel like I know it pretty well. So “If a patient is in the precontem- and continue to face daily. Using yes, it sounds overwhelming when plation or contemplation stage of addictive objects like drugs, food, you hear it, but a good provider change, one of the evidence-based pornography, chemsex, [and oth- can navigate it when he or she is treatments recommended is harm ers] for attachment and coping is really skilled and cross-trained, and reduction. For example, a patient clearly dysfunctional and I hope willing to do the case management might not be ready or willing to use as a community we can find other piece of talking to the doctors, the condoms even in a high-risk set- ways of coping that do not fulfill psychiatrists, the therapist if there ting or discontinue drug or alcohol society’s expectations of us (i.e., to is one, the case manager, and most use, so we discuss PrEP and PEP be self-destructive, hypersexual, importantly the HIV doc as well.” as an urgent priority to keep the irresponsible, etc.).” HIV-negative [person] just that— For her trans patients, their jour- Chauppette employs the “stages negative. Behavior change is a slow ney is even more painful, she says.

16 NOV+DEC 2020 | POSITIVELYAWARE.COM/SUBSCRIBE They are more heavily judged, and as ➥ 1 they like to remind her, they reside in Pre-contemplation the “caboose of the LGBT train.” (NOT READY) “My transgender patients face 2 sexual and physical violence, murder, Contemplation verbal and non-verbal disrespect, (GETTING READY) housing and work discrimination, and mental and physical health 6 ignorance and insensitivity. It is just Relapse awful.” She implores us to treat our transgender community members with kindness, support, guidance, and respect. “My transgender THE STAGES OF CHANGE patients of color face even more challenges given their desire to live 3 authentically atop the culture man- Preparation dates from their ’hood.” She says (READY) she works closely with them to help them live authentically and dignified. 5 “I help them see that the rudeness Maintenance and lack of sensitivity from others should be addressed, but not in an aggressive manner. I teach them not 4 to be ‘played’ and not to be messy Action even when the messenger is a mess. It is beneath them to become messy too. We practice ways to respond that permits them an option when they feel disrespected, and how to that during our struggle➥ we might with can make them engage in get their needs met without alienat- have gone too far with PNP. Often self-defeating behaviors.” ing others. As Michelle Obama says, it is a reaction to our own internal- Chauppette says to let them ‘When they go low, we go high.’” ized homophobia, our rage as to know who can help them if and why we are viewed as “less than,” when they wish to take a time-out, “There are many things we can and a derailment from our psychic or get a knowledgeable profes- do!” exclaims Chauppette when pain. Leading authentic lives is the sional to help. “Do not have rescue asked what we can do as a society goal, but that should not include fantasies or a need to be needed. to address mental health and self-destruction.” If you like drama, you will likely be addiction. “First, we must educate If you know someone who is unable to help them. Be patient ourselves about mental illness and struggling with addiction or mental with strong boundaries. Speak know that addiction is a mental health issues, there are lots of dos truth and explore resistance. Do illness. We need to understand that and don’ts, says Chauppette. “Do not enable. Do offer a more realistic there is a genetic load [the presence not be harsh with them. Talk to option instead of abandoning them. of unfavorable genetic material in them from your heart and your For example, if someone you care the genes of a population] for many head. Recognize that they are for is in withdrawal, instead of giv- mental illnesses and certainly for sick, not ‘bad.’ Recognize they are ing them more alcohol or drugs or addiction. Addiction rarely occurs lost and that you must earn their money for either, call paramedics without the presence of other respect by giving them respect, instead. Do not be fearful of their psychiatric illnesses. Understand… and not pushing them to do things anger. Remember, if you are healthy that addiction and other psychiatric that they are not ready to do.” She yourself you will not enable them.” disorders should not be shamed or encourages her patients to Google As for the pandemic, Chauppette judged. I tell my patients there is search celebrities with addiction, says, “I’m not seeing much COVID no shame in either, except knowing bipolar disorder, or ADD/ADHD, to in my HIV-positive patients. Most of [that] you might or do have them help them see that they are not them, their immune system is prob- and not get help. That choice may alone, and that even very successful ably stronger than it’s ever been, be based in shame and as a result people can have these burdens. because of the meds. you will stay sick and your life will “Teach them the drug or object of “Honestly, I don’t worry about HIV not be yours. We need to stop using over-attachment is not the problem. anymore, in terms of lethality. It’s terms like addict, crazy, hype, and Transference of addiction is the the easiest to treat—to me addic- junkie so that people who need help norm. That what they are attached tion is the hardest to treat, and co- cannot be turned away from seek- to is fulfilling a need. I always teach occurring mental illness is second ing help. Seeking help is a sign of patients that there is function in in terms of difficulty to treat. HIV, strength, not weakness. For those of dysfunction! That means there are you just need to swallow the pills, us who are out about our addiction underlying psychological needs for the most part, right? Been there, or mental health history, I commend [being] addressed, albeit in a dys- done that; it’s old news to them. The you. Remember, people cannot functional way, by using the form of only thing they complain about is, ‘It shame us if we do not have shame addiction they are burdened with. doesn’t give me anything, doc.’ I say ourselves. I would like to respect- Help them understand that they are no, it’s just keeping you alive. Hello? fully request that as members of the not bad human beings but that the It’s keeping you alive, and do you LGBTQ community we recognize illnesses they are likely burdened want to stay alive?”

POSITIVELYAWARE.COM/SUBSCRIBE | NOV+DEC 2020 17 ‘As someone who has experienced intimate partner violence, I know as a Black trans woman I’m blessed to have my own space. I’m able to set boundaries for myself. That’s not the case for everybody.’ TIOMMI JENAE LUCKETT Addressing partner violence and trauma in the time of COVID-19 Survivors and advocates face new problems, and develop new forms of support BY OLIVIA G. FORD

18 NOV+DEC 2020 | POSITIVELYAWARE.COM/SUBSCRIBE Arkansas-based advocate Tiommi Jenae Luckett said it best, center, and all staff on the premises), and bluntly, in a recent conversation: “Under the auspices of the profound impact of trauma not just on health outcomes, but on indi- COVID, every bad thing that could happen has happened.” viduals’ ability to access care at all. Positive Women’s Network–USA (PWN) has been a longtime leader At the time of this writing, the abusing them were constantly in this movement, spearheading the world just crested one million known present. Some reports indicate that annual National Day of Action to deaths from COVID-19—a pandemic instances of physical violence that End Violence Against Women with to which the United States’ federal were reported were more severe: HIV on October 23. Early in the pan- response has been so counterpro- strangulations, stabbings, burns. demic, PWN assembled a resource ductive that the nation quickly rose But abuse is not limited to page on their website addressing the to lead the world in case numbers physical violence, or visible injury. “crisis within a crisis” of IPV, HIV, and and fatalities. The disease has cata- Violence can take numerous forms, COVID-19. lyzed months of relative confinement including threats; emotional or Luckett, a PWN staff member, to homes, massive job losses, disar- economic abuse; isolation; cancel- shared recollections of the initial ray in education systems, isolation ling health insurance or withholding days of lockdown: “When COVID first from loved ones, few to no social medications; claiming a partner has hit, it was a scramble to try to find outlets—a total upending of societal COVID-19 in order to restrict contact resources for these women”—places norms, which many experience with their children; or exerting power where someone leaving a violent alongside their rage at the current by blocking use of prevention tools situation could be safe not only from administration’s denial, grief for like soap or hand sanitizer. abuse and COVID-19, but also from those who have lost their lives, and “COVID-19 has given abusive the trauma of discrimination. fear of potentially being next. individuals additional tactics and A May 2020 piece on TheBody. We are also facing the most excuses for maintaining control,” com on PWN’s early pandemic contentious and consequential said Ashley Slye, who works at the response related a story of a mem- presidential election of our lifetimes, intersections of HIV and domestic ber of transgender experience who as uprisings nationwide bring atten- violence as the Positively Safe left an abusive partner, only to end tion to state violence and murder program manager at the National up in a shelter run by a Christian of Black people—and face brutal Network to End Domestic Violence organization. They required her to repression by authorities. Then there (NNEDV). Globally, UN Women—the hide her gender identity and present is climate change, culprit for this United Nations entity charged as the sex she was assigned at birth season’s historically devastating with promoting gender equity and in order to stay there. fires in the western U.S. and cata- empowerment—has sounded the “As someone who has experienced strophic storms and flooding in the alarm about a “shadow pandemic” intimate partner violence, I know as southeast. of violence against women and girls a Black trans woman I’m blessed to The link between crises and the mounting amidst this worldwide have my own space,” said Luckett. uptick in rates of domestic violence crisis. “I’m able to set boundaries for myself. is well documented; COVID-19 Intimate partner violence (IPV) That’s not the case for everybody.” follows that model, and brings its is already a concern of stunning For Angie Espinoza, unfair hous- own unprecedented challenges. proportions among women with ing, limited social services, employ- “[Addressing intimate partner vio- HIV. Groundbreaking studies in 2012 ment insecurity, and lack of child lence] is complex all the time; add revealed what many advocates and care all interact to compound risk for COVID to it and it makes it infinitely providers in the community knew domestic violence under COVID-19 more difficult,” said Katy Davis, PhD, anecdotally: that most women with conditions. of the Women’s HIV Program (WHP) HIV had experienced some form of “Many of our clients are paying at the University of California, San violence or trauma. Women with HIV anywhere from $500 to $1,000 [per Francisco. “People can’t get any were twice as likely as the general month] for a single room that may kind of breather from each other, population of women to experience have two adults and three-plus kids,” because they’re all stuck at home.” IPV, five times more likely to endure explained Espinoza, who coordinates Initial drops in calls to domestic sexual abuse, and five times more domestic and intimate partner vio- violence services (which have likely to have PTSD (post-traumatic lence services at Queens, New York’s remained largely open, if modified, stress disorder, commonly associ- Voces Latinas, which empowers and during the pandemic) and police ated with survivors of war) as a result trains immigrant Latinas to address reports turned out to be a negative of these and numerous other forms HIV and violence in their communi- sign: Victims were often unable to of traumatic disruption to their lives. ties. “There is no space for privacy, reach out for help because those These conditions were found to and [it] puts more people at risk for negatively affect women’s physical abuse.” health, as well as their mental well- Many individuals may be coping AUTHOR’S CONTENT WARNING: being and quality of life. with crisis, and their own trauma, by VIOLENCE, ISOLATION,SYSTEMIC OPPRESSION. IF YOU ARE FEELING These findings spurred a raft of increasing substance use—which THREATENED RIGHT NOW, IN THE advocacy up to the federal level to can heighten violence risk. “Usually, U.S. YOU CAN CALL THE NATIONAL address this epidemic of violence, the partners would be ‘bread-winners’ DOMESTIC VIOLENCE HOTLINE: and promote healing in medical and and so the clients had some time 800-799-SAFE (800-799-7233); OR service settings through trauma- away from the abuse,” Espinoza went TTY, 800-787-3224, OR CALL 911 IF IT IS SAFE TO DO SO. YOU CAN informed care. This approach strives on in our email conversation. “But ALSO SEARCH FOR A SAFE SPACE, to recognize and address, in every without work, families are stuck DOMESTICSHELTERS.ORG. area of service delivery (including together in confined spaces. Partners

COURTESY OF PWN-USA the physical environment of the are abusing more of substances such

POSITIVELYAWARE.COM/SUBSCRIBE | NOV+DEC 2020 19 as alcohol, which impacts not only agency and fearing for their safety, When Voces Latinas’ staff shifted clients but their children.” she conceded: “If the only solution to conducting their domestic vio- ◆ ◆ ◆ we provided was ‘you need to get lence and women with HIV support away from that partner,’ we wouldn’t and education groups online, they Dramatic scale-up of telehealth be engaged with our patients.” knew their clients would need help engagements has been made One solution, said Davis, is “really getting the necessary equipment. possible in part by relaxed federal trying to listen to the patient, while “It is so important for them to still regulations around distance appoint- at the same time providing education, stay connected to those groups, to ments. For those isolated by not just and talking to them about how they continue to hear the message,” said COVID-19 but also an abusive partner deserve to be in a healthy relation- Nathaly Rubio-Torio, LMSW, the controlling contact with loved ones, ship, they deserve to be treated with organization’s executive director. a telehealth visit with a provider may respect and kindness—and trying to COVID-19 relief funds were a lifeline. be their sole contact with the outside model that in our relationship with “We applied them towards basic world. It’s also an opportunity for them.” needs like food and rent assistance, abuse to be witnessed and assessed. ◆ ◆ ◆ but we also designated some funds But an abusive partner may moni- toward technology,” she explained. tor a survivor’s devices and mes- This depth of engagement is key Her staff spoke to each client about sages, or appointments themselves, to a trauma-informed approach to their specific digital needs, whether making it impossible to engage hon- care: Providers and clients know one it was a phone with video capability, estly. Davis shared an anecdote from another well, and there is a level of an internet connection at home, or a WHP provider: “[They] talked about trust. WHP and Voces Latinas both support exploring Zoom. doing a Zoom [video] meeting with a employ trauma-informed practices— “Even these ear pieces,” Rubio- patient who we know is in an abusive Davis directs the trauma-informed Torio said, gesturing to the head- relationship, and seeing her partner care initiative at WHP, also a key phones she and I were both wearing open the door every few minutes source of research on women, HIV, during our own video conversation, to check in on what’s going on, in a and trauma. That foundation has “is something we don’t even think really creepy and disturbing way.” helped these organizations prepare about, that they need in order to even WHP providers exercise caution clients for the dizzying pivot to participate in a group.” They were with what is said on these visits, and telehealth and virtual community able to purchase or provide what follow clients’ lead as to whether engagement—which included bridg- clients needed—including numerous they can speak freely. In many cases, ing a massive digital divide. sets of ear buds. For clients in close

Many individuals may be coping with crisis, and their own trauma, by increasing substance use—which can heighten violence risk.

partner interference may make video quarters with concerns about privacy, meetings impossible. or their household knowing what Such conditions complicate safety groups they participate in, ear pieces planning for survivors. But many provide some relief. survivors may not consider leav- “Whether they’re cooking, or taking—in part because they have no ing care of the kids, they have their other access to some resource their group in their ear”—even if a woman partner provides. “For trans people in is only able to listen, or speak up qui- abusive relationships who have lost etly on a rare occasion. “That’s been their jobs during the pandemic, they extremely helpful,” said Rubio-Torio, are now more dependent on their “that avoids isolation.” abusers than ever,” said Arianna Lint At WHP, in San Francisco, the of Arianna’s Center, which serves a staff engaged in a comparable ongo- largely undocumented population ing process to assess clients’ barriers of Latinx people of trans experi- to staying connected, technological ence in South Florida. “Without an or otherwise, and support them in income, many are trapped in violent managing those obstacles. Clients relationships.” and staff at WHP are accustomed In one recent instance at WHP’s to a high level of contact with the clinic, Davis related, a woman’s abu- program—through appointments sive partner was her caregiver. “She with providers or social workers and couldn’t care for herself; she needed ‘[Addressing intimate partner educational groups, but also social him there to help her get through violence] is complex all the activities planned by the patient her day-to-day medications,” Davis time; add COVID to it and leadership team, or sharing a meal. explained. When police removed him it makes it infinitely more Virtually all those traditional points from the client’s home, relief soon difficult. People can’t get any of contact have dissolved due to turned to panic, and she took steps COVID-19. for him to be able to return to the kind of breather from each WHP staff have maintained a apartment. other, because weekly online education group While Davis noted that these they’re all stuck at home.’ on Wednesday mornings—a time kinds of cases are hardest, with the when the clinic would normally be KATY DAVIS, PHD tension between respecting a client’s teeming with community members

20 NOV+DEC 2020 | POSITIVELYAWARE.COM/SUBSCRIBE enjoying the weekly breakfast and “To improve our support, domestic other activities. “People can tune into violence organizations are likely Zoom, sort of a replacement for being going to have to change how we able to come in and hang out,” Davis ‘Our clients develop trusted respond to survivors,” Slye con- explained. But it’s not the same as relationships with their trans cluded. “If we are telling survivors to in-person engagement—which WHP peer navigators and the call the police, are we being mindful made very easy for clients to tap into. pandemic has, to some extent, that this may not be a safe option for “We were cultivating a really strong them? Have we talked through all the community,” said Davis. “Now all of a denied them this support.’ options before we get to that recom- sudden, we are discouraging people ARIANNA LINT mendation? Are there other things from coming in—which was our major that we can be doing as a community mode of connecting with people.” to support survivors? Though Florida’s Arianna’s Center “[How are we] addressing the sys- provides and refers to virtual servic- tems and how they have harmed sures, Lint also lamented the suspension vivors—and really, have they actually of in-person support. “It gives case helped us end domestic violence?” managers an opportunity to assess ◆ ◆ ◆ the clients’ situations,” she said. “Our clients develop trusted relationships In the U.S., while the COVID-19 pan- with their trans peer navigators and demic continues to rage, businesses the pandemic has, to some extent, and services are going through their denied them this support.” paces of reopening—for better or On the other side of the coin, worse. But the crisis and its fallout WHP providers have found that for are far from over. some clients—particularly young The need for providers to hone women—the pandemic approach their awareness of abuse that may be to care and services is a better fit taking place in their clients’ homes for their lifestyle. They may have is unlikely to dissipate. One place to struggled to make their clinic visits in begin is a guide for telehealth provid- the past, but a therapist or provider ers working with clients experiencing calling them for their appointment abuse during COVID-19, published

Many individuals may be coping with crisis, and their own trauma, by increasing substance use—which can heighten violence risk.

anti-Blackness of it all being ampli- means they don’t have to travel or fied because of COVID.” by the LEAP (Look to End Abuse even remember they had an appoint- Immigration status can become Permanently) Program and acces- ment scheduled. “They’re actually a tool of control by an abusive sible online alongside numerous trau- getting a service they weren’t getting individual, who may threaten to ma-informed anti-violence resources before, because we were asking call Immigration and Customs for professionals at leapsf.org. them to come in, and that wasn’t Enforcement (ICE) on a partner who As a result of the drastic mea- really feasible for them,” Davis said. is undocumented, and can also be a sures required during stay-at-home “There has been increased access.” deterrent from reporting violence to orders, many service providers may ◆ ◆ ◆ police, for fear of detention. have additional useful tools in their For Black people and immigrants toolbox of keeping clients engaged in Criminalization and racism are experiencing violence in their homes, care and support—and new insights persistent forms of trauma that have the police may be the last people into clients’ needs. been amplified in this era. Similar to they want to involve. “We’ve seen “It’s transforming the way we’re HIV, generations of racial inequity time and time again that police going to provide services,” said and repression have led to conditions intervention can lead to unwarranted Rubio-Torio of Voces Latinas. “Now, in which Black, indigenous, and other incarceration and death for people not everyone will need to leave their people of color become sicker and of color, particularly Black people,” home, their kids, their family life to die more often from COVID-19 than said Slye of NNEDV. According to come in and get a service here.” their white counterparts. And reports Slye, many involved in the domestic Davis agreed: “Even if and when are showing that Black people are violence response are grappling with things go back to normal … we will more frequently targeted and crimi- its connection to a criminal legal sys- be much more open to doing things nalized for alleged violations of safety tem deeply rooted in violence against virtually for patients who clearly pre- measures such as social distancing. Black and Brown people. fer or need that,” she said. “That has “That ties into the [Trump] admin- The Violence Against Women Act, been one real benefit: [to see that] istration … in their lack of response co-authored by current presidential we weren’t actually reaching every- regarding COVID and their immediate candidate Joe Biden, was passed one the way we were doing things response to deploying the military as part of the 1994 crime bill, Slye before.” against Black and Brown bodies,” reminded. Funding for domestic said PWN’s Luckett, speaking of violence response has been deliv- violence against participants in ered through fight-crime initiatives recent anti-racist uprisings. “As a and administered through the

DAVIS: COURTESY OF PWN-USA • LINT: COURTESY OF ARIANNA’S CENTER ARIANNA’S OF COURTESY LINT: • PWN-USA OF COURTESY DAVIS: Black person, I can’t help but see the Department of Justice.

POSITIVELYAWARE.COM/SUBSCRIBE | NOV+DEC 2020 21 Stories of women remaking a life Overcoming trauma and stigma to live free COMPILED BY ENID VÁZQUEZ

was at a national community meeting when I heard Celeste Watkins-Hayes, PhD, of Northwestern University, read from her latest book, Remaking a Life: How Women Living with HIV/AIDS Confront Inequality. Through the stories of the women she interviewed, Dr. Watkins-Hayes shows how trauma trans- muted to power by linking socioeconomic problems with medical advances, political empowerment, and human resiliency. In August, IViiV Healthcare invited Dr. Watkins-Hayes to lead a webinar with women based on the stories in her book. Although Dr. Watkins-Hayes wrote about Black women, it’s a universal story of moving from stigma to personal—and political—power.

STORIES HAVE BEEN EDITED FROM BOTH THE BOOK AND THE WEBINAR.

DAWN’S STORY the root of Dawn’s pain. Their lack Injuries of inequality of awareness fueled Dawn’s sense of anger and betrayal, and she Dawn’s story was read by Chicago continued to distance herself. After native Evany Turk, now national field exhausting all of her invitations to organizer for the Positive Women’s sleep on the couches of various Network-USA. family members and friends, Dawn ended up on the streets. “If it wasn’t for HIV, I’d probably be “My village wasn’t safe,” she said dead.” through tears. Dawn grew up in a Black After her HIV diagnosis, she working-class neighborhood on entered a home for women living Chicago’s West Side in the 1970s with the virus and addiction, this and ’80s. Racial and economic time staying [at a housing facility] residential segregation and lack for two full years to become strong of investment by government and enough to make it in the world with- private business limited upward out numbing herself with drugs. She mobility for residents, especially began systematically gathering the young adults. tools she would need to change her When the sexual trauma of life’s course. Dawn’s childhood collided with the “I realized that doing drugs was structural blows and deteriorating killing my body more than HIV. I safety net afflicting her community, decided that I wasn’t ready to die. I the effects were combustible. didn’t want HIV to take me out. So, I Dawn moved in for a few weeks had to stop getting high.” with the person she most idolized, Dawn’s personal story has also her 19-year-old stepsister Jackie. led her to political work. Since leav- Jackie used intravenous drugs and ing St. Mary’s, Dawn has been a dated the neighborhood dealers prominent voice in the HIV commu- who maintained her supply. Dawn nity and a trusted leader. She has followed suit, and her addiction traveled the country speaking about grew. Her habits became a source of HIV prevention, met with public deep disappointment and sadness officials to advocate for increased for her parents, who knew nothing funding for AIDS programs and ser- about the molestation that was at vices, and served on the boards of

24 NOV+DEC 2020 | POSITIVELYAWARE.COM/SUBSCRIBE prominent national and local AIDS child.…Tanya’s challenges did not organizations. stop there. Diagnosed bipolar at 16, “The only risky behavior I do now she had been struggling ever since is telling a politician what I really with her mental health. HIV preva- think of him.” lence is much higher among women suffering from mental illness; the DR. CELESTE WATKINS-HAYES mental instability and debilitating ON DAWN’S STORY stigma make them vulnerable to drug addiction and high-risk sexual Rising intracommunity violence, a experiences. growing drug epidemic, declining After waiting an hour and a funding for healthcare and other half past her appointment time, community services, and a pre- Tanya was finally called in to see cipitous rise in mass incarceration the doctor. “Your numbers,” he said that warehoused many friends, with deep concern, “aren’t so good. family members, and neighbors Stress will wreak havoc on your made the barrier between life and immune system. You have to find death increasingly porous for young ways to deal with what is going on people like Dawn. without sacrificing your health.” The environmental and personal It is a nebulous term for some: turmoil in Dawn’s life was occurring social determinants. But as Tanya’s precisely when the AIDS epidemic story demonstrates, poverty, family was gaining an early and strong crises, unaddressed mental health foothold in vulnerable communi- issues, a broken and inefficient ties, quietly taking up residence in criminal justice system, and weak neighborhoods and networks, and social support networks can be weaving itself into the epidemiologi- devastating to health. These issues, cal fabric. which confront significant num- “If it wasn’t for HIV, I’d probably bers of people living with HIV, can be dead.” In Dawn’s assertion, she severely undercut even the most is reflecting on the chokehold that promising of medical advances and was slowly but steadily killing her. scientific discoveries. Addiction, with its roots in Dawn’s history of childhood sexual abuse, Dr. Smith on Tanya’s story was shaping every aspect of her life, from her tools of economic survival This story recalls so many patients I to her residential choices to how saw. So many women have families she formulated, sustained, or dam- and the family came first. It led to aged relationships with friends, fam- disease progression. There’s the ily, and intimate partners. Dawn’s saying that ‘you can’t take care of broader environment, lacking many anyone else if you can’t take care of opportunities and resources, also yourself.’ posed obstacles that she addressed The doctor in the story—those through a variety of coping and sur- were also my words to my patients. vival strategies that were destroying Now I’m with a health com- her health. pany—to change the tons of pills needed. But even if we had the best TANYA’S STORY treatment in the world, people need When systems fail and to address stigma and make HIV a women’s burdens are too heavy smaller part of their life instead of dominating it. Tanya’s story was read by Kimberly Smith, MD. A longtime HIV specialist Dr. Watkins-Hayes asked Dr. Smith in Chicago, Dr. Smith is now head of about the role of institutions. Research and Development for ViiV Healthcare. The social safety net doesn’t have enough for the meds of the Forty-year-old Tanya is a mother folks who come in. And that’s just of four children. She lives in Phoenix the folks who even make it there. House, an apartment building for You have to start with people people living with HIV, that has where they are. I think peers are so suffered for years under the weight important at the beginning, in deal- of poor institutional staffing and ing with that self-stigma. meager funding… One thing that stands out was Tanya’s story reflects what can that hour and a half that you fall happen when a breakdown in the behind. My patients really appreci- safety net meets a client facing mul- ated that one of those crisis times tiple barriers. might be theirs. Institutions are not Tanya’s world effectively came to devoted to spending the real time

POSITIVELYAWARE.COM/SUBSCRIBE | NOV+DEC 2020 25 At the nexus of body and soul An HIV doctor seeks solutions beyond medicine INTERVIEW BY ENID VÁZQUEZ

hile listening to Celeste Watkins-Hayes, PhD, read from her new book at a ViiV Healthcare community summit, it was so interesting to me that Kimberly Smith, MD, was now Head of Research and Development for the company. I had heard Dr. Smith tell similar stories when she was an HIV specialist at Rush University Medical WCenter in Chicago. Although corporations are under pressure to do things that make them look good—like giving money—ViiV has gone beyond funding medical presentations. Dr. Smith is perfectly poised to do something Dr. Watkins-Hayes advocates: speak truth to power.

I spent 20 years taking care of She and her partner had a child, she patients in Chicago and got to experi- went on to college. She did all of that. KIMBERLY ence through them many ways of Then my patient stopped taking her SMITH, MD navigating challenges. One of the really meds. She just went back to, “I don’t interesting things that Celeste captured want to deal with this. I don’t want to in [her book] Remaking A Life was the take medicine anymore.” Ultimately, experience of women and how they were she ended up dying. The daughter felt always challenged by everything else … almost mad at her mom. “We went going on in their lives. I can’t tell you how through all of this. Got everything back. many times I had patients who weren’t We got you back to independence.” able to focus on their own care because There are so many stories, so many they were so busy focusing on some families and relationships. That’s one trauma that was happening in the life of thing as a provider that I felt: being their child or their husband, or someone a part of their lives in a way that was else. So I’m very happy that she’s out profound. There’s nothing like it as far there telling the stories. as being able to affect people’s lives in a I always talked to my patients about positive way—hopefully. the fact that they could not manage to can do a lot of things to make better care for anybody else if they weren’t ENID VÁZQUEZ: It’s interesting that this medicines, and we are doing that. But there. You have to focus on your own story tells what you saw, that medicine we’re also trying to find ways to address care. So I find ways to have them see is only going to take you so far. stigma. And find ways to have people that as the highest priority. A lot of them feel comfortable—or to feel more com- did. Lots of folks got it together, took KIMBERLY SMITH, MD: That’s right. fortable—in their skin. all their meds, and dealt with all that The question we asked through the One of the things that we’ve been drama too. But then it was a challenge webinar was, if you could magically doing is anti-stigma campaigns. One of for others. create something, what does everybody the new campaigns is called Being Seen, I remember there was one patient in need? One of my responses was safe and is focused on Black MSM [men who particular who stands out to me because spaces. That people can be safe in have sex with men]. Our Positive Action when I met her, she was extremely ill. whatever way they came to be. Some of group is doing that. It’s basically inter- I met her and her daughter, who was it is physically safe, from violence, from viewing different Black MSM from all around 18 at the time. Her daughter liter- danger and risk, and protected from this parts of society, including actors, direc- ally brought her back to life. When you sort of angst and all of that. tors, and artists. They’re telling stories treat MAC—mycobacterium avium com- It’s also spaces where you can about how they are impacted by the plex, that in itself often requires three actually be you. Some of that is for visual of Black MSM in different settings. different medications. Then you had transwomen—transwomen and trans- Someone, for example, told the story three or four different medicines for HIV. men—to be able to be who you are. And in one of the first podcasts about how Her daughter made a routine for her. that I think it’s so important for people, the first time he got ahold of an E. Lynn She lined up all her pills. Made sure living with HIV or not, to be able to have Harris book was the first time he actually she took every one of her meds. She just a place where they feel like they can be saw the feelings that he had represented completely got it together and got back themselves and not be judged, and not on paper. to being independent. And she was so be discriminated against. The way I describe it, particularly proud of what her daughter had done. for the women that I took care of, is They were so close, for an extended You mentioned in the webinar dealing that the stereotypes about women liv- period of time. It was really something with stigma so that HIV could be just a ing with HIV, that they had to be drug to be a part of that relationship between part of someone’s life and not dominate it. users or that they were quote unquote the two of them. promiscuous—I would remind people Then her daughter, after all that, she In general, that’s the philosophy. What that the overwhelming majority of my

could go on with her life. And she did. can we do? Pharmaceutical companies patients got HIV from their husbands or HEALTHCARE VIIV OF COURTESY

26 NOV+DEC 2020 | POSITIVELYAWARE.COM/SUBSCRIBE TIOMMI LUCKETT’S STORY Social media—that was my commu- Claiming space in HIV activism nity. That was my promise to my Higher At the nexus of body and soul Power, that I would help others. Activist Tiommi Luckett read her This work is so much bigger than me. story. She is now the Communications It encompasses all of us. I got tired of & Training Assistant of the Positive talking about me. What’s next? Women’s Network-USA. There’s no more weight holding me down about being trans or being diag- Diagnosed HIV-positive in September nosed with HIV. I’m a whole person. HIV their long-term boyfriends. 2012, I was fortunate to receive treat- is just a part of who I am. You don’t know what a ment, and within six months had an person’s story is. The notion undetectable viral load. A few years later, Activist Gina Brown, based in New that you ascribe something a nurse in my doctor’s office asked if I Orleans, co-facilitated the session. She negative to people is just would be interested in speaking at an asked, “If we had a magic salve, what always so problematic to me. event in Washington, D.C., on Medicaid would you put in it?” It got to the point that when expansion in my home state of Arkansas. I had fellows or students I said yes, but had no idea what was in CELESTE WATKINS-HAYES: The first thing presenting cases to me and store for me. A couple of months after I would add is protection from sexual they would describe some- my visit to Washington, I was asked trauma. I was surprised at the number body with HIV and talk about to speak at other venues on behalf of women who experienced sexual how they got it—that was of transgender rights. From there, I trauma, which is where ‘I’m not worthy” the least relevant part. What attended the HIV Is Not a Crime Training comes from. [Dr. Watkins-Hayes and her matters is, how are they tak- Academy, a gathering of activists, leg- research team interviewed more than ing care of themselves now? islators, lawyers, people living with HIV, 100 women over 10 years. Sixty percent How are we going to take and other experts to discuss and plan of them had experienced childhood care of them? How are we ways to reform and modernize laws that sexual abuse.] going to help them through criminalize HIV. One of the things I wanted to highlight whatever they’re going My work in the HIV and transgender is people getting involved in the political through at that moment? communities continued to grow. I serve system in a way that helps all of us—the Better medicine is really as a blogger and advisory board mem- willingness to speak truth to power. important. Simpler medicine ber for various HIV and transgender is really important. But it’s organizations and held a seat on the EVANY TURK: One of most important not just that. People need to Arkansas Ryan White HIV planning things is you don’t have to know any- have the other parts of their group. I did it to get my words out there. thing but your story, what you’ve been lives coming together well, People related. Women relate to what I through. What do you need? You don’t too, in order to allow them am saying. It started to break down the have to disclose. to be able to consistently differences in our lived experiences, and The more someone shows up, the stick to their medicines, and it brought me closer to a community of more comfortable they get. not be traumatized by their people that I trust. medicines, actually. We heard from I always put up a façade that I was KIMBERLY SMITH: I would add the need people in clinical trials for long-acting happy. Then I said, “You know what? It’s for safe spaces. I mean, clinics that are therapy that one of the biggest benefits time for me to live for me. I can’t live for safe. I mean housing that is safe. was not having to take a pill every day, how people want me to be.” The reality is that you can’t get the which was a daily reminder of living services you need—the counseling, the with HIV. When you think about it, Luckett also talked about being invited to health care, and everything else—if you something happened to them that was speak at the White House with a coalition are not in a safe space. likely traumatic. They received their HIV of women in 2016; she wrote about the diagnosis. There’s so much self-stigma experience, “From the Big House to the From Remaking a Life that people blame themselves. So, tak- White House,” for The Well Project’s blog, The extraordinary conversion of HIV/ ing a pill every day is a reminder. How “A Girl Like Me.” AIDS from an inevitable death sentence do you get past that? to a manageable chronic illness in Long-acting therapy, that’s one way. Webinar discussion well-resourced countries like the United But people have to be able to get past States is not only one of the most that trauma to live out their lives. And EVANY TURK: Eventually, you get tired noteworthy medical achievements of then they won’t see taking medicine as of being tired. Tired of the stigma, tired the past 35 years, it is also a significant a negative thing. of the denial. That’s when you turn it social achievement. … Perhaps one of So why is a pharmaceutical com- around. That’s when I gained purpose. the most important but underrecog- pany doing something to sponsor these You learn about it. You learn about nized outcomes of this mobilization was types of podcasts? Because we recog- treatment, and that you can’t transmit the emergence of the extensive HIV nize that there’s so much more to living it [if you have undetectable viral load]. safety net of human service providers with HIV and helping people thrive than That made me less afraid of the stigma and other entities who would prove vital making medicine. It’s about having and allowed me to live my life. I’m going for individuals confronting difficult cir- people be able to live their lives in a to do the things in my life that I want to cumstances by offering four things: positive way, to be themselves. Address do. I’m going to do the things in my life n Access to health care that stigma, and it empowers people that I love to do. n Modest economic assistance to be able to take on what they need to n Extensive social support, and take on to control this disease. TIOMMI LUCKETT: I really thought I was n A path to political and civic alone. When I saw that others experi- engagements VIEW some of the community outreach enced these traumatic experiences— at Viivhealthcare.com/en-us that it was common—I was angry.

POSITIVELYAWARE.COM/SUBSCRIBE | NOV+DEC 2020 27 communities, you understand this. But do not under- estimate the importance of the discussion that we’re COVID-19’s having and how we are fram- ing that discussion, because the issue of health disparities impact is not obvious for the overall population of the United States. Crowded housing. on Latinx Chronic medical conditions. Environmental racism.” communities ❖ ❖ ❖ “THE PURPOSE of our research The pandemic is hitting Latinx was not only to highlight people harder; HIV researchers say structural drivers of the it’s time to create policy changes pandemic among Latinos in the United States, but to BY ENID VÁZQUEZ make sure that we come up with findings that are useful to make changes and have a positive impact on the health of our communities. “We have a great opportunity to respond to the emergency and change the negative impact that the pandemic is having among Like the HIV epidemic, the COVID-19 pandemic Rodríguez-Díaz used “Latinos” Latinos, but also to make shows what happens to people who are socially and for the sake of simplicity, changes that can have a while recognizing the many durable impact on Latino economically disadvantaged—greater risk of disease ways that people identify. communities.” “The attention to the and death. ❖ ❖ ❖ Latino community has been Already understanding in transmission dynamics,” part of the discussion of the “OUR STUDY was in part how these disparities are published July 23 online in pandemic since very early, developed because of our harmful to health, two Annals of Epidemiology. He because, unfortunately, there historic involvement in groups of HIV researchers discused his study during an were disparities in our Latino health disparities. Many of us working together document- August 5 webinar organized communities that the pan- have worked in the HIV field ed the greater COVID-19 risks by the Latino Commission demic is just highlighting. for decades. And the knowl- for two vulnerable groups— on AIDS in collaboration with “For those of you edge that we have gained in Black and Latinx people. other agencies. Note: Dr. engaged in work with Latino health disparities and HIV in The researchers say they want more than just statis- tics to show to government Policy and political needs officials and other policymakers. They want policymakers JEFFREY CROWLEY, MPH, Georgetown documented immigrants, who are barred to work towards ending the University Law, is an expert on from accessing Medicaid for their first five inequities in the first place. HIV/AIDS. He spoke to policy needs. years in the U.S. COVID-19 shows the public health reason that everyone needs cover- Study on COVID-19 n Address health care not just through age. Address housing instability. Extend and Latinx the health system, but through housing, paid sick leave. Support families to support employment and working conditions, communities. Address systemic racism CARLOS E. RODRÍGUEZ-DÍAZ, and other structural factors. and deal with issues of distrust. PHD, MPH, is a community n Use contact tracing together with other health scientist with the responses such as education. “If only this study could tell us some Milken Institute School things and then we can say it’ll be taken of Public Health, George SHORT TERM: Protect against occupational care of,” said Crowley. “We’ve provided Washington University, exposure, such as the Defense Production the data. This is what we need to do. And I focusing on action research Act, used by the White House to order think there are a lot of reasons why policy- on the social determinants meatpackers to return to work. Protect makers want to say, ‘Oh, we’re responsible of health. He is lead author testing and health care access. Address for everybody. We don’t have time to go of the first nationwide analy- food insecurity. Collect information based down and do this for this group, this for sis of COVID-19 cases and on gender and other factors. that group.’ But from what we’ve seen, we deaths in the Latinx popula- can’t just trust that by giving data about tion, “Risk for COVID-19 LONG TERM: Address health care access disparity impact on Latinos that policy- infection and death among and coverage. All states need to expand makers will respond appropriately. We Latinos in the United States: Medicaid. This will not help many need to make that happen.”

Examining heterogeneity ©KLEBERCORDEIRO-ISTOCKPHOTO

28 NOV+DEC 2020 | POSITIVELYAWARE.COM/SUBSCRIBE the Latino communities was Rodríguez-Díaz said this was employment it’s because communities of very transferrable and useful no surprise: “It’s a profile we • age (younger than 35) color, including Latinos, are these days.” see very often.” living in metropolitan areas The study was modeled “What we know about where you have more air pol- ❖ ❖ ❖ on one published a month crowded housing in the lution because of transporta- earlier examining the impact BECAUSE SO MANY early Latino community is that we tion and other industries. In of COVID-19 on Black com- COVID-19 cases in the U.S. often have households with rural areas, it has to do with munities. Dr. Rodríguez-Díaz occurred in the Northeast, multiple families because industries that are there, pointed to differences the study looked specifically it’s part of the experience of as in the case of Texas, or between Latinx groups. at different regions to make migration. It’s part of some other parts of the states “We know that not all comparisons. cultural practices. People where you have refineries Latinos in the U.S. share one It found that in the have different explanations, and other industries that are unique story. We have people Midwest and the Northeast but we have documented this constantly polluting the air. who speak different lan- (specifically New York, New in the past. With crowded This compares with other guages, Spanish or English Jersey, and Connecticut), the living, you have multifamily trends in environmental jus- for the most part. They are rates of COVID-19 cases were housing. So people are com- tice and how communities of geographically located in highest in the counties with ing in and out for work, but color are disproportionately different places. They have greater Latinx populations. there’s also less space for affected by environmental experienced migration in “This means that Latinos distancing. pollution.“ different ways. So, all those were disproportion- “Air pollution has been The employment findings elements were considered in ally affected early,” said Dr. associated with respiratory were consistent, he said, the way we approached the Rodríguez-Díaz. conditions that are exacer- with U.S. reports that most data.” In the South, however, no bated when the person is Latinos couldn’t stay home. greater risk was found. infected. Air pollution has “They had to go out and ❖ ❖ ❖ For counties across the often been documented work because they are front- THE STUDY looked at county- country with more Latinx where communities of color line workers and they are level data through May 11, people, the COVID-19 rates live. There are different rea- working in industry, some when some states began to were higher with sons for that. In some cases, of which were considered relax stay-at-home policies. n A greater proportion of Counties considered “Latino” Spanish-monolingual were those with a Latinx people Study on Black people and COVID-19 population greater than n Lower unemployment 17.8%, which is the percent- rates GREGORIO A. MILLET, MPH, of the Public Policy Office of age of the Latinx population n More heart disease amfAR (Foundation for AIDS Research), was lead author in the country as a whole. deaths of the study that inspired the Latinx report from Dr. Latinx make up the largest n Less social distancing, Rodríguez-Díaz. Before joining amfAR in 2014, Millet, an racial and ethnic minor- and epidemiologist, was senior policy advisor of the White ity group in the U.S. Puerto n More days passed since House Office of National AIDS Policy. “Assessing differential Rico, which does not have the first reported case impacts of COVID-19 on Black communities” by Millet and counties, was added as one colleagues was published online May 14 in the Annals of ❖ ❖ ❖ county. Fourteen percent of Epidemiology. all counties (443 out of 2,700) “WE KNOW, unfortunately, Millet said that the information presented by Dr. were predominantly Latinx. that for monolingual Spanish Rodríguez-Díaz “has really not been part of the national The Latinx counties had a speakers to have access to conversation in the media.” Latinx percentage ranging prevention information and According to Millet, the study he led found that, “Black from 22.9% to 47.9%. to engage properly with the counties were only 22% of all counties, but 52% of COVID Nationally, COVID-19 diag- healthcare system is much diagnoses and 58% of deaths. nosis rates were greater in more difficult. We also found “One of the things that did not make it into the media as Latinx counties: 90.9 vs. 82.0 more COVID cases among much, though, was just as Carlos had mentioned before- per 100,000 persons. those with lower unemploy- hand when we looked at primarily Latino counties—that Predominantly Latinx ment rates, and this is inter- underlying health conditions did not explain the disparities counties were more likely to esting. … Consider this as that we were seeing in COVID-19 cases or deaths. What we n Have people who were we move forward to deaths. found was that health care access, the number of people younger (on average, What we are seeing here is in shared housing, and unemployment were all associated under 35) that the cases are more com- with COVID-19 diagnoses in our paper for Black Americans, n Have a greater number of mon among Latinos that are and it was a lot of the same things that we saw in the individuals without health working, who couldn’t stay at COVID-19 paper for Latinx populations. insurance home to prevent infections.” “When you look at the maps that we have for Black n Have a greater number Americans, you can see underlying health conditions are ❖ ❖ ❖ of persons per room in a elevated for heart disease as well as diabetes, which is asso- household IN TERMS of deaths from ciated with COVID-19 in the southern U.S. This is where 55% n Have fewer monolingual COVID-19, the numbers were of Black Americans live. English-speaking Latinx greater in “But that’s not really the big story. The big story is the n Have a greater proportion n Latinx counties in the social determinants of health within those same counties. of monolingual Spanish- Midwest So it’s poverty. It’s unemployment. It’s lack of health insur- speaking or bilingual n Latinx counties with ance. Those are the main issues that are driving not only individuals • crowded living COVID-19, but also HIV in these counties that are primarily conditions counties where Black Americans live. And it’s exactly the These differences were • elevated air pollution same story that’s happening in the Latinx counties.” statistically significant. Dr. • higher rate of

POSITIVELYAWARE.COM/SUBSCRIBE | NOV+DEC 2020 29 Latinx account for essential, like the meatpack- or other to actually be there. They’re not just dis- ing and multiprocessing communities change the parities for COVID-19. We see industries. are equally conditions the same disparities for HIV. affected by that affect We see the same disparities ❖ ❖ ❖ the imple- 33% our com- for other respiratory condi- ACCORDING TO the study’s mentation (1 in 3) of all confirmed munities. To tions, like the swine flu that conclusion, “COVID-19 risks of certain COVID-19 cases take a closer we had back a decade ago, and deaths among Latino policies. in the U.S. in which look at those which is similar to COVID-19, populations differ by region. “We are ethnicity/race is known. issues so we where we saw members of SOURCE: CENTERS FOR DISEASE Structural factors place okay with CONTROL AND PREVENTION, can move Latino communities more Latino populations and par- people JUNE 11, 2020 faster to solu- likely to be hospitalized. ticularly monolingual Spanish working and tions. To do “So we really don’t need speakers at elevated risk for feeling productive, and get- more action research. Work to keep documenting the COVID-19 acquisition.” ting an income. However, we with communities that are disparities or writing papers “We have demonstrated need to provide the best con- already doing something and around it. that not all Latinos are equal. ditions possible to prevent evaluate what is working. “We do need to move But again, there are many infection at work.” Use some implementation forward on the policy impli- assumptions and there are science to expand good prac- cations. What are some of ❖ ❖ ❖ several discourses in our tices very fast. the other things that we can country that make it harder Action research “That’s what we need,” he do to actually reduce these to communicate challenges continued. “Otherwise we disparities and to help these in our communities. I hope DR. RODRÍGUEZ-DÍAZ urged will keep describing prob- communities that are at high- that this study serves to partnerships between health lems that we know are affect- er risk for COVID-19?” document challenges and departments and commu- ing our communities.” the nuances in the experi- nity-based organizations, “I completely agree with WATCH THE PRESENTATION, ences of the Latino com- as well as greater media you,” said Gregorio A. Millet, including an update on munities in the U.S. Because visibility for those groups. MPH, of the Public Policy Puerto Rico, at the Latino we also know that we need Asked about “next steps,” he Office of amfAR (Foundation Commission on AIDS’ policy changes, but the replied, “We will probably for AIDS Research): YouTube channel. FOLLOW policy response cannot be have enough data, perhaps “We know that the dis- PANDEMIC CASES in real time the same for all counties, all better data, soon. I am now parities are going to be there. with amfAR’s COVID-19 communities, and assuming trying to look at what we They’ve always been there. dashboard: ehe.amfar.org/ that all communities of color can do with these findings They’re going to continue to disparities.

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

Know your rights Support the fight lambdalegal.org/hiv

30 NOV+DEC 2020 | POSITIVELYAWARE.COM/SUBSCRIBE 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 MIND, BODY, AND MEDICINE Taking care of your mental health while living with HIV BY JACOB PETERS, PHARMD

ow more than ever, many of us are grappling with Hotline at 800-273-TALK (8255). maintaining our mental health. Whether it is daily Uncontrolled mental health problems can lead to people not taking life, what you see in the news, or anything else their HIV medicines consistently, going on, it is important to understand our mental which may cause detectable virus health and the impact all these things can have ˇ levels, make you more likely to catch other illnesses (from the on it. Living with HIV can pose challenges and Letting your common cold to opportunistic raise some questions about how to be the best providers infections), and overall decrease advocate for yourself and your well-being. know when the control you have over HIV. a medicine is Taking medicine has become As a psychiatric pharmacist, Short answer, a lot. A diagnosis of working or if a habit for managing my HIV, NI have specialty training to better HIV can be life-changing, which you feel like and I know how important it is understand the ins and outs of may lead to symptoms of dif- it is causing to stay undetectable. Now my medication to help people with ferent mental health diagnoses, side effects provider wants to start me on a their mental health. I also have like depression or anxiety. It’s are essential medicine for my mental health. the privilege to work a couple days important to reach out for help if to getting you Is that okay? each week with people living with you are feeling more sad or wor- to the right HIV, which has helped me better ried than usual. Help can come in treatment Medicine is also an important understand some of the unique many forms, from talking with a as soon as tool in the treatment toolbox challenges they face. Below are trusted friend or a healthcare pro- for someone living with mental possible. some questions patients often vider to going to a therapist or tak- illness. Given the importance of ask about their mental health and ing medicine. If you find yourself HIV medicine to getting to unde- their medicine that you may be currently in crisis, like feeling as ˇ tectable, it’s important to make wondering as well. though you may want to attempt sure there are not any problems suicide, it’s best to go to the near- like drug interactions with your What impact does not taking care est emergency room, reach out to new medicine. HIV medicines and of my mental health have on my your doctor, or use national hot- medicine for mental health can

HIV management? lines like the Suicide Prevention be broken down or used by the UNSPLASH

32 NOV+DEC 2020 | POSITIVELYAWARE.COM/SUBSCRIBE body in similar ways, take some time to work. That is you do decide to drink or use a which can lead to one often not what someone wants substance, be honest with your or both medicines to hear because they feel bad provider or pharmacist about it. not working as well, now. I would give anything to The more we know, the better we causing more side have a medicine that could work are able to care for you. It may be effects, or sometimes instantly, but until then, it is best scary to think about admitting to both. It is best to make to stay informed. doing something you think others a habit of telling all As an example, antidepres- will think is “wrong,” but by being your providers and sants may take six to twelve honest and open, we can better pharmacists about all weeks to relieve all your symp- find treatment that best fits you. the medicine you take, toms. During that time, you may including ones you experience some improvement, I have started a medicine for buy over-the-counter, but it is likely to take a while to my mental health, now what? and asking them to be feel at your best. sure they are account- There also may be a need to try Great. Having that initial conver- ing for any potential different medicines. Since each sation and reaching out for help issues. person is unique, it is difficult, if can be really difficult, so you not impossible, to predict how should be proud of yourself. Having medicines each of us may respond. So long A lot of people wonder if they that interact sounds a as you are not having intolerable will be on a medicine for their little scary and side effects, what is important mental health for a long time, I am not sure how I during this time is to keep taking or even for the rest of their life. feel about that. How ˇ your medicine. You may have It really depends. One, it can serious can these heard it before, but a medicine depend on your specific diagnosis. interactions be? Since these you never take, never has a Some mental health diagnoses do medicines chance to work. And since these require long-term treatment with It is good to always take so long medicines take so long to work, medicine, sometimes years up to ask these kinds of to work, some some folks may stop because the rest of their life. Others can questions because folks may they think they are not effective. be more short term. For example, some interactions are stop because Do not do this. When you stop if you are currently going through taking them or miss doses, the serious and should they think a stressful time in your life and be avoided. Basically, clock starts over and it may take you and your provider discuss and they can fall anywhere they are not even longer to reach effectiveness. agree to try medicine, you may on a scale of how effective. Do Things that may help during this only need to take it for a short severe they are and not do this. period would be trying therapy or period of time, maybe just a few what kinds of effects When you engaging in healthy coping habits months. An open discussion with they may cause. stop taking (art, exercise, etc.) to bridge the your provider will help you both Some medications them or miss gap, which can always be helpful settle on the best course for you. may cause your HIV doses, the with or without medicine. medicine to not work clock starts Conclusion as well, either through increasing over and it Speaking of coping, some days how fast your body processes it or I just need something to drink may take Taking medicine is something by blocking it from getting where when the day is finished. Can I that should not be taken lightly, it needs to be in order to work. even longer still do this if I start medicine for but it is a central piece of helping These are best avoided. to reach my mental health? you feel better in many cases. However, some interactions effectiveness. First and foremost, safety is may not be as severe. For example, Generally, alcohol or other drugs very important. This article may a few antidepressants can have ˇ are not recommended to take leave you with still unanswered their metabolism slowed down with prescription medicines, espe- questions, or questions that are by HIV medicines. When that cially medicines for mental health. more specific to you. Your doc- happens it may lead to more A side effect of some medicines tors, pharmacists, nurses, and side effects. But, in those cases for mental health can be that other healthcare providers can we start with lower doses and they may lead to not being able to give you important information increase those doses much more sleep as well. Alcohol, for example, about your specific medicine and slowly to make sure the medicine contrary to popular belief, actually what to keep an eye out for. But does not cause any problems. Or worsens peoples’ sleep cycles. So, do not forget, you are your own if it does cause a problem, we can combining them may worsen a best advocate. Having open com- address it sooner. Regardless, as side effect of a medicine or wors- munication with your providers a patient, letting your providers en a symptom of your diagnosis. can help us work with you to find know when a medicine is working Medicine aside, alcohol and the best medicine and treatment or if you feel like it is causing side other drugs can worsen mental for you. effects are essential to getting health problems. From causing you to the right treatment as soon mood changes to worsened JACOB PETERS, PHARMD, BCPP, BCPS, as possible. depression symptoms, it is best to is a Clinical Pharmacy Specialist in avoid using alcohol and drugs for Psychiatry for Indiana University What should I expect if I start your overall mental well-being. Health – Methodist Hospital in taking medicine for my mental Additionally, some combina- Indianapolis. health? tions of medicines with alcohol or other substances can lead to Most medicines for mental health overdoses and can be lethal. If

POSITIVELYAWARE.COM/SUBSCRIBE | NOV+DEC 2020 33 A great love endures Remembering the humility and joy of Timothy Ray Brown BY MARK S. KING

Timothy Ray Brown passed away in his home on September 29, 2020, with his loving partner, Tim Hoeffgen, at his side. "I was so moved by their devotion to one another," said activist Mark S. King, who wrote this story, "and I was honored they let me tell the story of their final days together. Timothy made history and it's a great loss, but no one will miss him more than his partner Tim."

im Hoeffgen did a quick google search of his Scruff date as he headed over to meet him. Tim was living in Nevada in early 2013, and the guy he had been chatting with on the dating app looked a lot like the man who was on the cover of the LGBTQ newspaper T in Las Vegas that week. When the door opened, Tim realized Timothy’s traumatized body has never his hunch was correct. Greeting him been the same. Sadly, his health has was Timothy Ray Brown, the first man been in freefall for the last six months, in history cured of HIV and the intense with a recurrence of leukemia that has focus of scientific and public fascination invaded his spine and brain. His partner, around the world. Tim, the Scruff date from Nevada, has “I was charmed immediately by his never left his side. personality,” Tim tells me in a call from That is no overstatement. When their Palm Springs apartment. “He is just Timothy was admitted to a cancer hos- the sweetest man.” The two men, Tim pital in April, Tim camped in Timothy’s and Timothy, have been together ever hospital room for seven weeks. Because since. of COVID-19 restrictions, neither of them Timothy Ray Brown is terribly shy. He could leave the medical campus. “It was also exudes warmth and humility, and a blessing to be there with him,” Tim is clearly grateful for his viral reversal tells me, “but it was rough. It’s so much of fortune. He is quite literally an HIV better to be home.” historical milestone, embraced by the There is a hospital bed in the one- community since he identified himself bedroom apartment Tim and Timothy as “the Berlin Patient” in 2010. share. Timothy is bedridden, and is we are awaiting has occurred. “He’s a The harrowing details of Timothy’s receiving home hospice care. Tim person you can’t help loving. He’s so medical journey, as a cancer patient and divides his time between caring for sweet. The cancer treatments have been a man living with HIV, are complicated. Timothy and fielding calls from con- rough. Sometimes I wonder if it’s worse Suffice it to say that, while Timothy was cerned friends as well as from various than the disease.” living in Berlin in 2008, an ingenious researchers to whom Timothy has gener- Indeed. Many of my friends lost to oncologist treated Timothy’s leukemia ously provided endless blood and tissue AIDS would agree with him. “Believe it with a stem cell transplant using a rare samples over the years. or not,” Tim adds, “this is the first time blood type that is genetically resistant “Timothy is not dying from HIV, just to in my life that I will lose someone…” His to HIV infection. When all was said be clear,” Tim says. “HIV has not been composure breaks again. and done, HIV was no longer found found in his blood stream since he was Tim and I both know that his partner, in Timothy’s blood and the scientific cured. That’s gone. This is from the leu- confined to his bed and surrounded by breakthrough, first reported at the 2008 kemia. God, I hate cancer.” medical devices, bears an unsettling International AIDS Conference, was cel- Tim is speaking on the phone with resemblance to a man dying of AIDS. ebrated around the world. me only a few feet from where Timothy It’s as if the Fates vengefully swept in to The treatment, it should be noted, is resting in his hospital bed. Tim sounds claim the AIDS patient who had escaped nearly killed Timothy and has been suc- exhausted, and resigned to what lies them. cessfully replicated exactly once– but directly ahead. Timothy has dutifully fulfilled count- has nevertheless provided vital insight “The hardest part has been seeing less media requests and invitations over into potential avenues of HIV cure Timothy go downhill,” Tim says, bursting the years, becoming an active public fig- research. into mournful tears, the kind that strike ure in the HIV/AIDS arena in spite of his But that was years ago, and without warning, even before the death social reluctance. He embodies a shared

34 NOV+DEC 2020 | POSITIVELYAWARE.COM/SUBSCRIBE TIMOTHY RAY BROWN (LEFT) AND TIM HOEFFGEN IN CAPETOWN, SOUTH AFRICA IN 2017

hope for a practical HIV/AIDS cure. At the only one.’” going to keep fighting,” Timothy replies, conferences and community events, peo- Tim Hoeffgen will join a unique group “until I just can not fight anymore.” ple living with HIV gravitate to Timothy, sometime soon: the surviving partners Tim takes back the phone, and I know reaching out for hugs and thanking him of those with an elevated place in his- it is time to go. I can tell he is stepping for the physical gauntlet he has been tory. He will probably be known as the away from Timothy as he quietly con- through. He is a projection of our longing widower of Timothy Ray Brown for the fides something else. for scientific discoveries and a marker for rest of his life. “I would be honored to “One of the researchers wanted just how far we have come. be known that way,” Tim tells me. “I love Timothy’s body, you know, to be left to Tim, meanwhile, has been Timothy’s him so much. I will gladly carry his mes- science,” Tim tells me. “I said, ‘thank you, loving guardian, intervening as neces- sage and his legacy.” but no. I think he’s done enough.’” sary to be sure Timothy wasn’t over- Our time on the phone is growing whelmed by requests. He has played the short, and I know Tim has things to do Tim Hoeffgen and Timothy Ray Brown role of media agent and even bad cop in for Timothy. I begin to wrap up our call asked me to tell this story as their way of order to safely buffer Timothy. when suddenly I hear Timothy’s voice on thanking the community and sharing the I ask Tim if his partner knows he is the line. news of this final chapter of Timothy’s dying. “Yes, he knows,” Tim answers. “Hello there, Mark,” Timothy says. “I journey. They asked that we give them the “Well, sometimes he doesn’t. It depends. hope you are doing okay.” I tell him I am space they needed during their remaining But I have asked him what he wants me fine. I am tempted to thank him for all time together. Tim Hoeffgen will release to tell people when we make his situa- he has done, as a kind of goodbye, but further updates at the appropriate time. tion public. He said, ‘Tell people to keep it feels too intrusive. Instead, I tell him fighting. Fight for a cure for HIV that to fight for as long as he wants. In other REPRINTED WITH PERMISSION.

COURTESY TIM HOEFFGEN TIM COURTESY works for everyone. I never wanted to be words, no longer than he wants. “I’m

POSITIVELYAWARE.COM/SUBSCRIBE | NOV+DEC 2020 35 36 NOV+DEC 2020 | POSITIVELYAWARE.COM/SUBSCRIBE Reclaiming identity A musician and educator reflects on his journey BY RICK GUASCO • PHOTOGRAPHY BY DERRICK WOODS-MORROW

“You have to earn my story. I don’t owe you my story,” says Phillip tested positive. I was in a state of shock Lambert, 34. Trust requires openness and work on both sides, he says. because I had just had a negative test result. I thought, “How could I have As a person living with HIV, he has been working hard to be open, and to allowed this to happen to me?” The show what life can be like on the other side of an HIV diagnosis. internalized stigma was too real. When the stigma directly affects you, it hits differently. Instantly, I blamed myself even Where are you from? of whom were unaware of their own though it wasn’t my fault. I went to see HIV status. Although my undergraduate an Infectious Disease Specialist two days I’m actually from Chicago and will rep degree was in advertising, this experi- later and started my regimen immedi- my city for life. Born and raised on the ence led me to pursue my first job in HIV ately but also felt extremely ashamed deep dirty South Side of Chicago, 93rd prevention research. and embarrassed. I went through a deep Street, affectionately called the Nine Tre. depression, failed out of the last year What drives your interest of my PhD, and I gained weight until I Describe your experience in working with youth? weighed nearly 700 pounds. In retro- as an HIV advocate. spect, it was the music and chosen fam- I’ve always loved kids. From a very young ily that saved my life. I want the people I have been working in HIV prevention age, I knew I was queer and was in tune who read this, the people who are posi- since 2004. I started as a sexual health with that queerness. I knew that the tive, to know that you have nothing to be peer educator in undergrad. When I was typical idea of what a nuclear family is ashamed of, that you are just as worthy younger, I loved to play devil's advocate, was not in my future and would not look as anyone else of living a full and rich life. and that natural interest led me to edu- the same for me. I was always drawn to cating in that space. After undergrad, I working with kids and supporting them What was your “coming out” moved into HIV research at one of the in being their whole selves without judg- process like—to yourself and disclosing leading LGBTQ+ health organizations. ment. I was the go-to babysitter and to others that you have HIV? From there, I became an Outreach nanny as a teen, but when I lost my mom Worker, an HIV prevention program at 16 to lung cancer and didn’t have my At first, I was just so shook and embar- manager, and then a digital education dad to rely on because my entire life, rassed to learn of my diagnosis that I ambassador for the CDC. People always leading up to that moment, he had strug- didn't talk about it at all with anyone thought I was positive because of how gled with a heroin addiction, it changed except for a handful of people I trusted. literate I was about transmission and my relationship to my peers. It forced me Then, after a year, I decided to write a history. I didn’t mind, but it bothered me to gain an even deeper awareness and status on Facebook about my diagno- that only people living with HIV are sup- understanding of youth. I was fortunate sis. That was my way of coming out to posed to be knowledgeable about it, like to have an extended family take care of friends and close family in a way that it is positive people's job to do the labor me, but my chosen family was where didn't feel so pressured to me. The post for the entire world, and for me that’s a home truly was. It's where I flourished was simple: In honor of World AIDS Day, hard no. and it is what continues to sustain me. I challenge everyone to get tested & know Biological family is what got me here; your status; because knowing is not only What got you interested in chosen family is what kept me here. beautiful but also self-care and self-pres- HIV advocacy and prevention? ervation. As a person who has been living How did you learn you were with HIV for the last year, know that adher- I didn't have anyone to talk to me about living with HIV? How did you feel? ence can at times be difficult but so worth it. No one that I knew had the informa- it. SILENCE = DEATH and ain’t nobody got tion either. I would read books and Life kept throwing me curveballs. After time for that. I posted that in 2016. search in chat rooms looking for infor- working for some of the leading HIV I was still so depressed and immobi- mation about sex. Sex education should research institutions for over 10 years, I lized by my depression. I thought often not be trial and error. I bought several contracted HIV. In the summer of 2015, about my PhD program and was trying whitewashed sexual health books at I was hospitalized for a blood disorder to find a way to reconnect with myself, Borders when I was 15 and shared them that causes me to have blood clots. to have some sense of normalcy. I was with my friends. I think that was truly They suggested that I get an HIV test learning to grieve the death of who I was my first step towards my work in sex ed which at first I declined because I had before my diagnosis. I connected with a because I went out and got that knowl- just recently received an STI test two friend and we decided to use music and edge and then brought it back to my weeks prior and all of my test results had writing as a form of therapy and as a way community. I was just 15. come back negative. After staying in the to practice disclosing, but it was so much At the end of 2007 through the first hospital for 10 days, my doctors decided bigger than that. From that, I wrote music part of 2008, I lived in Cape Town, South to run an HIV test again to confirm that that was defined both by advocacy and Africa where I worked exclusively with I was negative. I agreed and was sure I a form of reclamation of my own identity children with one or both parents who had nothing to worry about. Moments as a person and as a sexual being. The had died of HIV. These were kids who before I was discharged, a doctor came music was healing, provocative, sex-pos- were now living in orphanages, many into the room and told me that I had itive, and a banger. I used music to come

POSITIVELYAWARE.COM/SUBSCRIBE | NOV+DEC 2020 37 out to myself. I also used music the edge. This wasn't something to announce myself as a person that I was able to understand until living with HIV. For the last few after I became positive and then years, I've been working as an all my intersecting identities really educator and previously had started to play out. So I have had to been a full-time nanny. None of prioritize and center my joy and care these people will be aware of my while staying in the work for libera- status until they read this story. I tion because Black positive lives hate feeling that I'm compelled matter. Black fat lives matter. Black to share every part of my person- trans and non-binary lives matter. All al story with anyone when they Black lives matter and in the words haven't done any work to earn of Fannie Lou Hamer, none of us can that trust. You have to earn my be free until all of us are free. Period. story. I don’t owe you my story. I realize that my story doesn't Anything else you’d like to say? have to be perfect to be shared. I don't know who needs to hear To people living with HIV—you’re this, but I'm hoping that by being worthy, you’re whole, you’re desir- open and sharing my experi- able. Some people aren’t going to ences of living with HIV I can want to engage with you because help someone else who doesn’t of your status and that means they know that there is happiness weren’t worthy of your time. Ah! [in on the other side of a diagnosis. Megan Thee Stallion voice] Getting That there is joy that comes in to and staying undetectable is a lot the morning, but that that joy will of work, but taking it one day and not be easy. The journey comes one step at a time gets the job done. with hard work and deep healing Always remember, you’re worthy and only you can decide when regardless of if you fit into the U=U and what that looks like for you. continuum or not. Some days, I don’t feel like taking my for a whole three years and during that To health care providers—healthcare medicine. I mean I do, but I want to be time sought out inspiration from Black is not a one-stop shop. Healthcare pro- and feel without having to worry about artists that could help me to see the proj- viders need to learn to take an individu- taking my medicine every day. I think it’s ect through. I had Boys II Men’s Mama alized approach with every client. Not important to be honest about that. I think on repeat for all of 2015 until Rihanna just nurses and nurse practitioners, but it’s important not to oversimplify or try to blessed me with Anti in 2016. Anti was doctors, too. Doctors also need to invest put a positive spin on our experiences as my HIV coping anthem for a year until in education that can help them to learn people living with HIV. Sza dropped CTRL in 2017. It gave a voice how to take anti-racist and anti-oppres- and validity to my feelings. At one time, I sive approaches to patient-centered care. Talk about your art. Do you didn’t have my status publicly displayed Give the information anyway, 100% of incorporate living with HIV? on the apps. I would engage in chats and the time. after disclosing my status, people would To researchers and epidemiolo- Nina Simone once said, “An artist's duty, ghost me. There’s a line from SZA’s 2017 gists—Google Robert Rayford. He’s a as far as I'm concerned, is to reflect the album where she says, Why you bother me, Black teen from St. Louis who died from times,” and that is exactly what I have when you know you don’t want me. Those HIV in 1968 whose death and diagnosis chosen to do. words made me feel powerful. Those was “discovered” in 1987. The first AIDS In 2015, I started using music to words reminded me that those people’s patients were covered by The New York come out to myself. Getting a positive rejection was not about me, but about Times in 1981. What would have been dif- diagnosis pushed me into a depression them and the societal stigma surround- ferent if Robert’s case would have been that I couldn’t seem to get out of. At ing HIV. In 2018, I released Protection into the first declared? Also, hire racial equity times, I felt suicidal. I was immobilized the world. For me, releasing that work and anti-oppression consultants and and drowning emotionally. I was home- signified relinquishing control from all educators to teach you about how people less. Some days, I couldn’t move for days the fear, shame, and stigma of my diag- at the intersections of Blackness, trans- and weeks on end. It’s very important nosis and giving myself permission to be ness, youth, and homelessness are most to me to emphasize here how much of free and worthy. impacted by HIV. Don’t just rely on your a struggle it is to access mental health My new EP, Shine, will be released intentions. Learn and study. services when you are Black, living with a in mid-November. I am in the early To artists and creatives—art helps chronic disability, and housing insecure. process of working on a book about my people connect with the messaging of Not all therapists can understand those experience. prevention and advocacy because health intersections and when you are poor, literacy is often presented in ways that Black, and queer, it makes access to What has been your experience exclude and dilute the voices and lived these services even more of a challenge. as a Black person living with HIV? experiences of Black and Brown peo- One of my friends who would visit me ple—especially queer, trans, and nonbi- often (an up-and-coming music produc- My experience living with HIV as a Black, nary people. This is where art comes in er) encouraged me to look to music to fat person has been trying, to say the to make prevention and anti-stigma mes- express how I was feeling, to convey my least. I have been working in HIV preven- saging stay with people. Make your art state of being. That day, Protection was tion. James Baldwin once said, To be a anyway. Do it for the messaging, not the born. Protection is a work that chronicles Negro in this country and to be relatively validation or the white gaze. Your work is the night that I was infected with HIV. It’s conscious is to be in a rage almost all the important. about the ways that I moved through my time —and in one’s work. Then let's add own cycles of grief and the path I took fat, or seropositivity, or disabled to the to reclaim my desirability. I worked on it equation. It can literally send you over

38 NOV+DEC 2020 | POSITIVELYAWARE.COM/SUBSCRIBE 24 HOURS IN THE LIVES A DAY WITH HIV 2020 OF PEOPLE AFFECTED BY HIV

< 11:10 AM: MIAMI, FLORIDA Everyday moments Sannita F. Vaughn: Love your life with in extraordinary lives grace. BY RICK GUASCO

The equinox only happens twice a year. Although the dates change from year to year because of the earth’s orbit, it is the time when day and night are of equal length, and signifies a changing of the seasons. In some ancient cultures, the equinox also symbolized a change of thinking. So, on Tuesday, September 22, 2020, the day of the autumnal equinox, what better day for POSITIVELY AWARE’s annual anti-stigma campaign?

A Day with HIV portrays their status, a few allies also 24 hours in the lives of people shared their support. “Today, < 5:20 PM: ATLANTA, GEORGIA affected by HIV—people take a I’m supporting a great friend of Richard Hutchinson, photograph of their day and post mine, Marissa Gonzalez, in rais- Jr.: I’m a Black Queer it to their social media. More than ing awareness of HIV,” posted millennial living with 200 pictures from across the U.S. Brittany Latresha Johnson from HIV! It’s not always easy being on this and representing 11 countries Fort Myers, Florida. journey, but God were posted, accompanied by A number of people take bestowed this journey the hashtag #adaywithhiv. But part in A Day with HIV year after on me to build me the real impact came from the year. Through the succession of and make me the best personal experiences behind images, you can witness their version of myself as possible. Plus, I’m those images. life’s journey unfolding. fine AF!! “HIV made me focus on all A year ago, A Day with HIV aspects of my health. It taught coincided with the birthday of me the importance of being long-time participant T.J. Elston, present, to focus on my goals who married his partner James and to keep moving,” said Kalvin the same day. The picture they as he took a break from his 6 took on the first anniversary is a.m. workout in Olathe, Kansas. one of the three versions of this “Focused on overcoming issue’s foldout cover. < 5:54 PM: an unhealthy past—proud to One of the most poignant SAINT PETERS, MISSOURI be positive, excited to share images shared last year was a Aaron Laxton: my story, optimistic about my picture taken by Debbie Sergi- Getting my son ready for bed. Thanks to future,” posted Matt Taylor from Laws with her father, who was in knowledge and medi- Philadelphia. hospice care. Her photo this year cations, I am healthy “In the past couple weeks captured a moment of remem- and able to keep up and even months, I’ve been in brance and grief. with an energetic and out of a dark space, yet still “Last year my photo was toddler. holding on to my light,” said sharing my dad’s hospice bed,” Richard Hutchinson, Jr., another she posted. “Spending the last Philadelphian. “I’ve been inspired month of his life with him I will by my struggles. I work every always cherish. This year the day to make better things hap- challenges have been great. Dad, pen in my life for those around you shine in my heart just from me. At the end of the day, I’m an further away. I love and miss you. amazing human being, growing, Staying strong.” learning, loving, creating.” For some, A Day with HIV is But for many, a day with HIV an opportunity to live by exam- is like any other day. ple. “Tell me and I forget; teach < 8:39 PM: “This morning is like every me and I remember, involve me SAN ANTONIO, TEXAS other morning,” said Rachel and I learn,” said Zeke from San Zeke: One person's revolutionary act Feder, from Michigan. “My day Antonio, Texas. “One person's against HIV stigma is starts at 7:30 a.m. I’m a social revolutionary act against HIV a monumental act of worker, and I continue to work stigma is a monumental act of kindness that is heard remotely, so I was checking my kindness that is heard around around the world! Tell me and I forget; teach email and my work phone before the world!” me and I remember, I wake my daughter up for From Miami, Sannita F. involve me and I learn. virtual 6th grade at 8 a.m. Life Vaughn posted, “Love your life doesn’t stop.” with grace.” “Getting my son ready for bed,” said Aaron Laxton from SEARCH FOR THE HASHTAG Saint Peters, Missouri. “Thanks #ADAYWITHHIV ON FACEBOOK, to knowledge and medications, I INSTAGRAM, AND TWITTER. IN ADDITION TO THE PICTURES THAT am healthy and able to keep up APPEAR ON THE NEXT SEVEN with an energetic toddler.” PAGES OF THIS ISSUE, AN ONLINE Because HIV stigma can GALLERY IS ON DISPLAY AT affect anyone, regardless of ADAYWITHHIV.COM.

POSITIVELYAWARE.COM/SUBSCRIBE | NOV+DEC 2020 39 6:30 AM: LUCKNOW, INDIA > Neil Biswas: Sunrise with parrots in my garden. I've been HIV-positive from 2005, am 62 years old, a single gay man pursuing a career in athletics. 7:30 AM: FORT MEYERS, FLORIDA >> Brittany Latresha Johnson: Today I’m supporting a great friend of mine, Marissa Gonzalez, in raising awareness of HIV. I have chosen to join this campaign to uplift, encourage, support, and motivate everyone who is impacted by it to continue to stay strong even when days get tough!

8:00 AM: MANSFIELD, TEXAS > Ashley Maldonado: My day starts off with a daily reminder, “I will be okay, I am loved, and it’s a bad day, not life.” Twenty-five years living with HIV, and nothing is worse than the mind being your worst enemy. 8:15 AM: OMAHA, NEBRASKA >> Erin Shafer Fulton: I was 17 in 1994 when I tested positive in Omaha during my tests to join the military. Now I’m 44. 8:53 AM: FORT MYERS, FLORIDA >>> Brian Keith Franklin, Jr.: Supporting my people in the HIV/ AIDS awareness movement. Anytime we put a virus before a person we take two steps back as humanity.

9:05 AM: SAN FRANCISCO, CALIFORNIA > Hank Trout: The workday begins! As long as my brain and my fingers can work together, I'll keep writing, trying to give voice to the trials and triumphs of surviving HIV/AIDS for 30+ years. 9:26 AM: LOS ANGELES, CALIFORNIA >> Damone: A day with HIV sometimes is demythifying HIV to help break the stigma and educating my communities on the HIV/AIDS facts.

40 NOV+DEC 2020 | POSITIVELYAWARE.COM/SUBSCRIBE adaywithhiv.com << 9:35 AM: TIRANA, ALBANIA Erti: Part of my routine day. I try to provide information in the Albanian language about HIV/ AIDS. I try to help by managing my HIV/ AIDS Albania social media campaign, providing information and support for people living with HIV in Albania. This is my daily devotion. < 10:05 AM: PORTLAND, OREGON Benjamin Gerritz: Twelve years strong staying safe, positive, and hopeful, while engaging in a CDC conference call advocating for service quality improve- ments to increase cultural affirmations and trauma-informed practices.

<<< 10:17 AM: CHICAGO, ILLINOIS Timothy Jackson: A Day with HIV means finally accepting that I am more than my diagnosis, my life still has value, and my smile is worth sharing with the world. << 11:00 AM: BOULDER, COLORADO Barb Cardell: What I would really love to see is all my dedicated sibs posting pictures of themselves phone banking, text banking, getting out the mother loving vote! < 11:10 AM: DALLAS, TEXAS Alegandro Deets: I made it my purpose in life to help those just like me.

<< 11:31 AM: DALLAS, TEXAS Neen: Keeping safe during COVID-19, but never give up living your life! < 11:39 AM: LAS VEGAS, NEVADA Deral Takushi: Participating in my first Zoom video call with my coworkers since we started to work at home in March. I was excited to pick out my dress shirt (that no longer fits—thanks pandemic), my virtual background, my mug of choice, and happy to put on a smile for everyone.

adaywithhiv.com POSITIVELYAWARE.COM/SUBSCRIBE | NOV+DEC 2020 41 24 HOURS IN THE LIVES A DAY WITH HIV 2020 OF PEOPLE AFFECTED BY HIV

11:48 AM: SHERMAN OAKS, CALIFORNIA > Andrea de Lange: When I learned I was HIV positive at age 23, I never imagined I'd be alive at 57, let alone happily married, with a beautiful daughter. 12:00 PM: SAN JUAN, PUERTO RICO >> Alexi Diaz: Trying to enjoy life as best as I can while talking about HIV and eliminating stigma through activism. That sometimes involves having a good time with friends while playing video games. 12:14 PM: ATLANTIC CITY, NEW JERSEY >>> Jack R. Miller: At home auditioning for commercial and TV and film as a long- term survivor of AIDS over 26 years!

12:33 PM: SAN FRANCISCO, CALIFORNIA > Bonnie Violet fka Duane Quintana: 8,030 days and counting. #blessed 1:25 PM: SAN JUAN, PUERTO RICO >> Gaddiel Ruiz: Diari- amente consumo mi medicamento para mantenerme vivo y saludable, pequeña acción que a la larga me ha permitido dis- frutar de mis animales, de mi entorno y de las conversaciones dirigidas a combatir estigmas. I take my medicine daily to stay alive and healthy, a small action that has allowed me to enjoy my animals, my environment, and conversations aimed at fighting stigma.

1:38 PM: CHICAGO, ILLINOIS > D’Eva Longoria: Looking fabulous while working hard to empower my community! 2:10 PM: SAN JUAN, PUERTO RICO >> Irving S. Rodriguez Acosta: Ever since I started the @Convihvir social media campaign, it has been great to be able to give voice to a cause that history has silenced. I don’t live with HIV, but HIV affects me because those close to me (and not so close, too) who do live with HIV suffer from stigma constantly in Puerto Rico.

42 NOV+DEC 2020 | POSITIVELYAWARE.COM/SUBSCRIBE adaywithhiv.com << 2:15 PM: SAN FRANCISCO, CALIFORNIA Jesús Guillen: Difficult times, so just giving flowers to all. < 2:24 PM: HOBSON CITY, ALABAMA Marvellus S. Prater: Patiently waiting on my turn to take the TB test for work at the local AIDS service organization. Living life in spite of stigma. Yes, I know that I am in need of a haircut... bad.

<<<2:30 PM: NAGPUR, INDIA Jyoti Dhawale: Gear- ing up for video-con- ferencing in an hour. My hair is my best asset—hence the Dyson AirWrap comes to the rescue. As a person living with HIV, looking your best can be quite a challenge. <<3:00 PM: ATLANTA, GEORGIA Nathan Townsend: Living and aging well with HIV. <3:00 PM: VALLEY STREAM, NEW YORK Nancy Duncan: I stayed home today, browsing social media and was very sad- dened to learn about Timothy Ray Brown (The Berlin Patient).

<<< 3:00 PM: BATTLE CREEK, MICHIGAN Ken: I thought today would be my last ra- diation treatment, but I have one more day to go! In 2001, I was diagnosed with HIV. I didn’t let that keep me down and I’m not going to let anal cancer defeat me either! << 3:08 PM: KEW GARDENS, NEW YORK Gamliel Martinez: This is one of my hob- bies that I do six days a week. Keep your body healthy and your mind healthier. < 3:30 PM: SONOMA, CALIFORNIA Liberty Breaw: At a birthday party for my grandson. I have three grandchildren. I know not of a greater gift than living to witness one’s grandchildren grow. adaywithhiv.com POSITIVELYAWARE.COM/SUBSCRIBE | NOV+DEC 2020 43 24 HOURS IN THE LIVES A DAY WITH HIV 2020 OF PEOPLE AFFECTED BY HIV

4:00 PM: LONDON, UNITED KINGDOM > Before 96: Enjoying time with a few of the long-term survivors around the UK at our Before 96 group. Sharing experiences and providing support.

4:01 PM: LONDON, UNITED KINGDOM > Emma Cole: Exercise hour at the Royal Hospital grounds in Chelsea—part of my self-care as a long-term survivor. Listening to Springsteen as I do my 5K. 4:10 PM: PHOENIX, ARIZONA >> Tony Monarrez: Fight- ing stigma every day. 5:03 PM: FORT LAUDERDALE, FLORIDA >>> Carlos Ernesto Masis: Every day has been a day with HIV for almost half my life. I am at peace. I’m joy- ful. I’m creative. I’m constant. I’m focused. I’m balanced.

5:05 PM: MINNEAPOLIS, MINNESOTA > Cree Gordon: Just chilling with my infectious disease doc, Dr. Jason Baker, at Hen- nepin Health. Taking care of my health is one of my greatest acts of self-love, especially during the hard times of 2020. 5:24 PM: PETERSBOROUGH, ONTARIO; CANADA >> Brittany Cameron: Thought I would grab a quick photo before our next peer interview.

44 NOV+DEC 2020 | POSITIVELYAWARE.COM/SUBSCRIBE adaywithhiv.com < 5:32 PM: MEDELLIN, COLOMBIA María Natalia Sáenz Agudelo: Traba- jando desde casa. Presentando nuestro libro, “Partiendo de sero—Cadena de historias positivas,” a estudiantes de la Uni- versidad de Antioquia. Porque el VIH también tiene rostro de mujer. Working from home Presenting our book, “Starting from zero—A chain of positive stories,” to students at the University of Antioquia. Because HIV also has a woman's face. << 6:00 PM: WINSTON-SALEM, NORTH CAROLINA Wanda Brendle-Moss: It’s my privilege to be collaborating with Gregg Cassin of Shanti. org. Today I met the Cancer Divas—what positive energy! It truly is my honor and privilege to be "the Glue," as Gregg calls me. COVID-19 has caused us to rethink how we connect in the advocacy world. Zoom keeps us close! << 6:57 PM: FORT MYERS, FLORIDA Ylondra Marrero and Ariel Vazquez, JEM Fab Fashions: We are supporting a great friend of ours, Marissa Gonzalez, in raising awareness of HIV. We want to remind everyone about the importance of getting tested. < 7:03 PM: NEW HAVEN, CONNECTICUT Jonique: Today I live with a smile.

<< 7:30 PM: WASHINGTON, D.C. Larry Bryant: Malcolm X Park, NW D.C. #thisis34yearswithhiv < 7:37 PM: SÃO PAULO, BRAZIL Saul Júnior Machado: Na minha casa. In my house.

adaywithhiv.com POSITIVELYAWARE.COM/SUBSCRIBE | NOV+DEC 2020 45 24 HOURS IN THE LIVES A DAY WITH HIV 2020 OF PEOPLE AFFECTED BY HIV

7:38 PM: FORT MEYERS, FLORIDA > Marissa Gonzalez: As an HIV+ heterosexual woman, the dating scene is rough! I’ve literally had dudes tell me “bye,” because of my status. It still stings a little bit, but I know what I offer and I promise they wouldn’t be able to handle it. 7:40 PM: LAUDERHILL, FLORIDA >> Ieshia Scott: After a busy day of case management, a hot shower, and a cousin’s Zoom meeting for my mental health, I’m just tired and ready for bed. 7:53 PM: BROOKLYN, NEW YORK >>> Thamicha Isaac: It’s that time of the day—Biktarvy time! This is a reminder of what’s keeping me undectectable.

7:57 PM: LONG BEACH, CALIFORNIA > Brooke Davidoff: Taking a break from Zoom college. One day I will become an HIV-positive women’s activist/peer advocate. 9:00 PM: ATLANTA, GEORGIA >> John Patton: I’ve been THRIVING with HIV since 2006. I had no other choice but to; all of the other options sucked!

9:36 PM: QUINCY, ILLINOIS > Tamara Dietrich: Found out I was HIV positive when I was seven months pregnant with my first born. Seventeen years later, Donovin is HIV- negative, a working high schooler doing what kids do—making us parents crazy. I’m blessed with this guy. He is my sunshine. 11:02 PM: LONDON, UNITED KINGDOM >> Shamal Waraich: HIV is a part of me, but it doesn't define me. I take ART (antiretroviral therapy) every day, allowing me to live well with the virus. Just two pills keep my immune system strong, alive, and healthy, making me undetectable and the virus untransmittable.

46 NOV+DEC 2020 | POSITIVELYAWARE.COM/SUBSCRIBE adaywithhiv.com POZ ADVOCATE SCOTT SCHOETTES @PozAdvocate COVID and people living with HIV in jails and prisons

his is my second column for POSITIVELY AWARE and my Legal advocates have had some second column about COVID-19. I promise I am going to success in securing preliminary write about other topics in future columns, but because orders to improve conditions only to see those orders reversed by the COVID pandemic is so pervasive and consequential, appellate courts. This has been I want to share information about how it affects people a source of frustration. Showing living with HIV in jails and prisons while still timely. that prison officials acted with the T “deliberate indifference” required To assist in this—and in keep- Yes, people in jails and prisons are to state a legal claim in such ing with my plan to share the more likely to have one of the pre- situations is difficult, because work of other advocates in this existing conditions that makes peo- it provides for a wide range of column—I interviewed Richard ple more susceptible to COVID-19. acceptable behavior on the part Saenz, a Lambda Legal Senior The less-than-ideal medical care for of prison officials. One bright spot People Staff Attorney focused on criminal chronic conditions like HIV while has been the order secured by justice issues and my co-author incarcerated increases the chances immigration advocates requiring living with for the chapter on prison and jails of contracting COVID-19 and suf- the nationwide release of vulner- HIV who are in AIDS & the Law. fering the worst consequences of able individuals from ICE deten- taking their it. After adjusting for age, people in tion. Many detainees have been medications SCOTT: We have heard about prison are 3 times more likely to die released pursuant to this order, and, as a outbreaks and higher levels of of COVID-19 if they get it. though it is also now on appeal. COVID in jails and prisons; can result, do you explain why people in jails and What are jail and prison officials Do you have suggestions for not have a prisons are particularly vulner- doing to help reduce the risk of people in jail or prison who are compromised able during this pandemic? COVID transmission in jails and living with HIV? immune prisons? system are SARS-CoV-2, the virus that causes People living with HIV who are COVID-19, is a highly contagious Practices vary widely, particularly taking their medications and, as likely not at virus transmitted primarily across state prisons and local a result, do not have a compro- increased risk, through respiratory droplets by jails. In addition to the prevention mised immune system are likely so it is more people in close proximity to each techniques mentioned above, the not at increased risk, so it is more important other; currently, the best ways Centers for Disease Control and important than ever that everyone than ever to prevent it are by meeting only Prevention (CDC) recommends take their medications every day. outdoors, remaining at least limiting the transfer of prisoners The other thing I would advise is that everyone 6 feet from others, wearing a face from other facilities, minimizing to take advantage of every precau- take their covering, and frequently washing movement across housing facili- tion made available: maintain your medications one’s hands with soap and water. ties, and suspending programs distance from others whenever every day. All of these ways of preventing (like work release) that involve possible; if face coverings are transmission are harder to make moving people in and out of the provided, wear them whenever happen in jails, prisons, or deten- correctional facility. One very you can; and whenever you have tion facilities, so once the virus effective way of protecting people the opportunity, wash your hands. finds its way into one of these is to release them, and tens of And, if you do get it despite taking places, it spreads quite easily. A thousands of people across the all these precautions, try not to recent study showed that the rate United States have been released panic—the vast majority of people of infection in state and federal from jails. Congress has expanded survive COVID-19. prisons is 5.5 times higher than in the authority of the Federal the public at large. Bureau of Prisons to release SCOTT SCHOETTES lives openly with individuals to home confinement, HIV and is the HIV Project Director COVID has been also been partic- resulting in home confinement or at Lambda Legal, where he engag- ularly problematic in senior living early release for over 1,000 federal es in impact litigation, public policy facilities for some of these same prisoners with “extraordinary and work, and education to protect, reasons but also because older compelling reasons.” enhance, and advance the rights of people are more likely to suffer everyone living with HIV. the most severe consequences of Have legal actions in court been this virus; are there traits of jail successful in improving condi- and prison populations that place tions or securing the release of them at higher risk? more individuals?

POSITIVELYAWARE.COM/SUBSCRIBE | NOV+DEC 2020 47 30 HONORING THIRTY YEARS

POSITIVELY AWARE POSITIVELY AWARE Past, present, future Survival allows the story to be told BY ENID VÁZQUEZ

In this, our 30th year of empowering people living with HIV with support and information, we look back and see recurring themes. Medical advances. Political battles. Frontline challenges. The stories come and go, and years or decades later, some become outdated.

But it’s the personal journeys that raise the spirit and often pierce the heart, and so remain immortal. And so we say good-bye to this anniversary in a fitting issue, alongside our anti-stigma photo campaign, A Day with HIV. In doz- ens of vignettes, readers living with and without HIV speak to overcoming stigma and thriving, and working to educate and help end the epidemic. “Raising Your HIV Survival Chances” (October 1991) is one cover that speaks perfectly to our anniversary—each one. Inside, the editor’s note tells us, “If you look carefully at our front cover, you’ll notice that the dice on the left are ‘fixed.’ One has 5 dots on each side’ the other has only 6 or 2 dots. Any way you roll these dice, you get 7 or 11. Clearly, your chances are increased. “Do HIV-positive people have ways to increase their chances of survival? Today, more than ever, the answer is ‘yes.’ … We trust you and your friends will benefit from these reports.”

La 12a. Conferencia “You Should Mundial del SIDA Be Reading…” AUTUMN 1998 For several years, a JULY 1991 quarterly Spanish- As shown by many language edition was community-based published, such as publications now gone, this issue covering the POSITIVELY AWARE, 12th International AIDS like many people living Conference. with HIV, is itself a long-term survivor.

48 NOV+DEC 2020 | POSITIVELYAWARE.COM/SUBSCRIBE If you're living with HIV, are taking your Ifmeds, you're and living experiencing with HIV, are decreased taking your meds, and experiencing decreased energy and unintentional weight loss, energy and unintentional weight loss, askask yourself yourself the the following following questions: questions: Have you experienced weight loss? Have you experienced weight loss? Have you recently lost weight without trying? Have you recently lost weight without trying? DoDo any any changes changes in inyour your weight weight negatively negatively affect affect your your health health andand how how you you feel? feel? DoDo your your clothes clothes fit fitmore more loosely loosely than than normal normal due dueto to unintentionalunintentional weight weight loss? loss? HaveHave friends, friends, family, family, or orcoworkers coworkers noticed noticed any anychanges changes inin the the way way that that you you look look based based on onchanges changes in your in your weight? weight?

DoDo you you have have a aloss loss of ofphysical physical endurance endurance or energy or energy associatedassociated with with unintentional unintentional weight weight loss? loss?

AreAre any any activities activities more more difficult difficult to perform?to perform?

AreAre you you exercising exercising less? less? Do you need to rest more often? Do you need to rest more often? Do you frequently feel tired after certain activities? Do you frequently feel tired after certain activities?

If you answered “yes” to any of these questions, bringIf you this answered sheet to your “yes” healthcare to any providerof these to questions , discussbring thiswhether sheet you to haveyour HIV-associatedhealthcare provider wasting. to Treatmentdiscuss optionswhether are you available. have HIV-associated Together you wasting. canTreatment discuss theoptions next steps.are available. To learn Togethermore about you HIV-associatedcan discuss the wasting, next steps.visit: IsItWasting.com To learn more about HIV-associated wasting, visit: IsItWasting.com

EMD Serono is a business of Merck KGaA, Darmstadt, Germany ©2019 EMD Serono, Inc. US-SER-0815-0011a(2) EMD Serono is a business of Merck KGaA, Darmstadt, Germany ©2019 EMD Serono, Inc. US-SER-0815-0011a(2)

Disease_State_Ad_7-875x10-75.indd 1 7/2/19 2:06 PM

Disease_State_Ad_7-875x10-75.indd 1 7/2/19 2:06 PM POSITIVELY AGING The San Francisco Principles Advocates issue new declaration for a new era

ONG-TERM HIV/AIDS SURVIVORS IN SAN FRANCISCO have written a statement of principles demanding Lgreater inclusion in policy making, according to a report in the Bay Area Reporter. The San Francisco Principles were announced on HIV Aging and Awareness Day, September 18, at an in-person news conference in San Francisco’s Civic Center. Hank Trout, the senior editor of A&U: America’s AIDS Magazine, said he and several other long-term survivors looked to the past of AIDS activism for answers about how to address the lack of representation. “We were inspired by the Denver Principles in 1983, when people with AIDS demanded they be included and represented in policy, research, treatment and FROM LEFT: VINCE CRISOSTOMO, SAN FRANCISCO SUPERVISOR RAFAEL MANDELMAN, care and we decided on a JOANIE JUSTER, PAUL AGUILAR, MICHAEL ROUPPET (KNEELING), HARRY BREAUX, statement of principles for BILLIE COOPER, DR. SANDRA WIN, HANK TROUT. PHOTO BY SAUL BROMBERGER. long-term survivors,” Trout told the BAR. “We need to be segment of people living with PTSD from the early, horren- techniques and programs. included.” HIV. We are the ones who dous days of this pandemic. While we recognize the suffered the first diagnoses Now we are in our fifties, importance of prevention, Who we are and the unmitigated fear of sixties, seventies and beyond, and heartily support the goal We are artists and musicians, catching or spreading the living lives we never expected of ending the AIDS pandemic, healthcare providers and disease; we are the ones who to have, lives that have been we insist that prevention not essential workers, community buried our friends after watch- riddled with isolation and drain resources from caring organizers and entertainers, ing them slowly disintegrate, loneliness, the expense of for those of us who have lived writers and caregivers. some of us losing our entire medications and healthcare with HIV for thirty, thirty- five, Among our ranks are long- social circle; we are the ones visits, declining physical forty years. Our surviving term HIV/AIDS survivors. ignored by our public health health, untreated substance still faces an economic sys- Although myriad definitions officials, laughed at by politi- use and mental health prob- tem that continues to evict, of “long-term HIV/AIDS survi- cians, condemned by religious lems. We live with a sense separate, and destabilize us. vors” exist, for our purposes, leaders, and shunned within of having been forgotten, The burden of compounding we are The AIDS Generation, our own communities; we are shoved to the side by AIDS healthcare costs, a frag- diagnosed with HIV during the the ones who put our bodies researchers and service mented healthcare system, 1981-1996 fifteen-year period on the line as unpaid guinea providers, unknown to geri- and increasing costs of living before the advent of HAART. pigs for pharmaceutical com- atricians. We survivors are continue to export many of us We bore the brunt of the AIDS panies; we are the ones who routinely ignored at HIV/AIDS away from adequate health- pandemic from the very first, submitted to the first toxic conferences, while funding care delivery systems. and today people over the age trials and research programs; for research and services As the first generation of of 50 comprise the largest we are the ones still living with is consumed by prevention people to age with HIV, we

50 NOV+DEC 2020 | POSITIVELYAWARE.COM/SUBSCRIBE face the debilitating Long-term survivors government subsidization for Resources must be allocat- physical and mental experience accelerated medical education, the lack ed to programs and services effects of aging at an aging due to the ravages of of respect for and prestige grounded in the information accelerated rate. HIV on the immune system. often associated with these and data gathered in HIV and We embrace in Comorbidities can appear specialties by the American aging studies. our definition of in long-term survivors some healthcare system, and the “long-term survivors” twelve years earlier than in time and physical demands We must align the fight for our HIV-negative their negative counterparts. required by the practice of long-term HIV/AIDS survivors sisters and brothers At age 50-54, cognitive and these specialties, the major- with other social and health- who faced the same physical abilities diminish ity of medical students have care justice movements, such fears, suffered the much more quickly in long- gravitated away from these as Black Lives Matter, the same losses, and term survivors. We are more specialties. Therefore, all LGBTQ rights movement, the endured the same prone to cardiac arrest, frailty medical professionals serv- women’s movement, the grief as we HIV- (osteoporosis), balance issues, ing long-term survivors and/ Native Americans’ movement, positive survivors. diabetes, CMV infection, and or older adults living with and all other movements And to this day, they innumerable other conditions. HIV must be trained in the and organizations working to continue to suffer the proper care and to ensure end racism, sexism, ageism, same PTSD, espe- These health concerns are state-of-the-art geriatric homophobia, and transpho- cially those caregiv- exacerbated by the intersec- healthcare specific to their bia around the world. ers and activists who tional problems of poverty, needs. Providers, especially rushed to the front depression, the costs of non-HIV-expert ones, must With these principles in lines of the fight and access to healthcare, be made cognizant of the mind, we are ready to lead against AIDS. unstable housing, mental physical, mental, and psy- the fight for health and social We acknowledge health concerns includ- chosocial indignities faced by justice for long-term HIV/ that we proffer this ing substance use, racism, aging long-term survivors. AIDS survivors everywhere. Statement in the sexism, homophobia, and From San Francisco to the midst of the COVID- transphobia. Mental health services for world, we invite you to join us 19 pandemic. We older people living with HIV in this fight. never imagined that While some ASOs [AIDS must be provided on demand, we would experience service organizations] have at a reasonable cost or free, DATED: SEPTEMBER 2020, the second viral pan- begun to offer programs and and without judgment and SAN FRANCISCO, CALIFORNIA demic of our lives. For services to long-term survi- stigma. many of us, this debil- vors, there remains a severe Paul A. Aguilar itating pandemic has dearth of those services and Mental health profession- writer; filmmaker; member, triggered more PTSD, programs, which reach only als serving older people San Francisco AIDS Foundation intensified our isolation, and a small fraction of the long- living with HIV must be HIV Advocacy Network; community activist and advocate interrupted our access to term survivors in the country trained to address issues of Harry Breaux healthcare—enhancing the and provide little geriatric the psychosocial damage suf- writer, community activist and urgency of our mission. healthcare. fered by long-term survivors, advocate Nearly everything the primarily but not limited Vince Crisostomo world knows about HIV/AIDS Long-term survivors are to isolation and loneliness, program manager, Elizabeth has been learned on the routinely relegated to the depression, and alcohol and Taylor 50-Plus Network, San backs of us long- term sur- sidelines at national and substance use, including psy- Francisco AIDS Foundation vivors. And we will no longer international AIDS confer- chological services and harm Michael Rouppet be ignored. ences, both in planning and reduction services. homelessness, affordable housing, tenants rights and in presentation. harm reduction activist Challenges Long-term HIV/AIDS sur- Hank Trout From the research on the Our demands vivors MUST be included senior editor, A&U: America’s effects of HIV on aging, we In solidarity with the 1983 in the planning and imple- AIDS Magazine; writer; know the following: Nothing About Us Without mentation of any programs community activist and advocate Us dictum of the Denver and services offered to them. Sandra Win, MD, MS, AAHIVS Today, people over the age Principles, we proffer the Again, Nothing About Us HIV/AIDS specialist and of 50 comprise more than following San Francisco Without Us. consultant, medical 55% of the people living with Principles for Long-Term epidemiologist, HIV and fair housing activist and advocate, HIV in the U.S.; in some cities, HIV/AIDS Survivors: Long-term HIV/AIDS board member, Marty's Place like San Francisco, that per- survivors MUST be given a Affordable Housing Corporation centage is about 65%, and There are severe shortages prominent seat at the table experts predict that people of HIV/AIDS specialists and in planning all national and AFFILIATIONS FOR IDENTIFICATION over fifty will comprise 70% geriatricians in the US. Given international AIDS confer- PURPOSES ONLY or more of the U.S. HIV com- the escalating costs of medi- ences to ensure that we are munity by 2030. cal education, the lack of not the “forgotten majority.”

POSITIVELYAWARE.COM/SUBSCRIBE | NOV+DEC 2020 51 THE CATEGORY IS...

truthfully it was bad luck and they are as deserving of love and life as anyone else. Despite life’s tragedies and hardships, by taking their medication they can at least have more energy and feel better; they deserve that at the very least.” —JONAH PIERCE

“I didn’t allow stigma in. Around 1983, a friend took her own life following an AIDS diagnosis. After my own diagnosis in 2014, I stepped out of the shower, and saw I was skin and bones, fragile and frail. Deathly looking, my ass cheeks literally hanging off me. I looked at myself in the mirror dead in my eyes and I said, “I have AIDS!” I immediately thought of my friend, and promised myself shame would not bring me down or take my life. From that day forward I have spoken publicly and informatively about my HIV status, allowing me to live a stigma-free life. I share that courage as well as giving others a public plat- form to live stigma free.” —ZEE STRONG

IN-YOUR-FACE “I confronted them without coddling their feelings. When REALNESS people would say ignorant things or ask inappropriate questions, I would simply If you’ve faced HIV-related stigma how did you confront it? inform them that it is inap- That’s the question we asked our followers on Facebook, Instagram, and Twitter. propriate and that my disclo- They served up some honest feelings and experiences sure is not an invitation to hurt me or be intrusive.” —JONATHAN MATTHEW “Since becoming positive in opinions of uninformed indi- with folks who are struggling MADISON 1985, I have always been hon- viduals do not change who I with adherence to the meds est about my status. Every am inside. Depending on the and with staying engaged in “After years of hiding and time someone tried shaming situation, I advise them to their care. With this group wondering if people knew me, I would educate them as Google some facts or I pro- of patients, the stigma and my status, I took back my much as possible. Education vide them with information. internalized shame is often power and my voice and stops stigma.” We are all in need of a little palpable. Having to take disclose publicly now. Stigma — MARCELO F. LEVY education, especially in deal- medicine daily becomes a still exists, and it can come ing with myths about HIV.” constant reminder of the from people you would least “By holding my head up high —MARISSA GONZALEZ trauma of their diagnosis. expect. I had recently been as well as educating not only Instead of being able to see told by a family member myself but everyone about “As a nurse working with the medication as offering that I am waving my ‘flag of HIV.” people living with HIV, I am them better health and life, indiscretions like a war hero.’ —@NAI4EVER desperate to find ways to they struggle with seeing Oh, buddy... you got that right. help patients overcome as the value of their life. I have Yes, I am!” “Soon after receiving my much of the stigma as pos- watched many people die —ERIN SHAFER FULTON diagnosis I would lower my sible. It’s killing people and agonizing deaths because head in shame, lock myself it’s the saddest thing ever, in of this, and I struggle with “As an individual who has in a room and cry. Today, four my opinion. trying to help them accept felt HIV-related stigma, years later, I know my HIV “A large portion of my and understand that they did education plays an essential

does not define me and the work continues to be working not do anything wrong—that role in reducing stigma and ISTOCKPHOTO

52 NOV+DEC 2020 | POSITIVELYAWARE.COM/SUBSCRIBE discrimination. I offer support Pa, who had died of AIDS. and speak out to correct stig- Without stopping to see who matizing myths and stereo- might have been looking, he types about HIV. Education gave me a big bear hug. I am starts with the self. Realize not a hugger, but that hug that different people face made my day/week/month HIV-related impacts differ- and year. He turned back ently. Becoming an advocate to me and said, ‘Whatever is walking with confidence.” you're doing, keep it up!’ " —ANTHONY ADERO —MARK L GRANTHAM

“I’m a long-term survivor of “I hid my status as self-stigma DINE OUT. AIDS, since 1994. I remember within took over. My story when my friends would be includes addiction to street here one week and dead the drugs; for years I didn’t END HIV. next. Stigma was very hard always adhere to my HIV to deal with back in the day medications, and I developed when HIV/AIDS was a death resistance to a few classes sentence. It was a scary of drugs. Living in the South, Find your city time, when you really didn’t I saw stigma within my own want anyone to know your communities. After waking and support local. status due to discrimination up from a medically-induced and the stigma of being coma following acute double diningoutforlife.com labeled as ‘the GRID [Gay- pneumonia, my only options Related Immune Deficiency] were to go into a nursing guy.’ Many people were home or to stay with family. I NATIONAL SPONSOR losing their homes, apart- chose my family. After rehab, ments, and jobs. It was a I didn't understand why I was scary time. When better still alive and why I did not die. treatment and care became I had wanted to die. As time more available, stigma was went by, I started attending a handled completely different few support groups and real- by educating the masses ized I had to share my story with current information on and take back control. That's condom usage, sex, and tak- when I opened up about my ing care of oneself with this status and drug usage. I no growing epidemic at hand! longer had to lie about the For me, it made me gain a real me or hide my past. I tough exterior on the outside started to live again, this and compassionate heart on time with no shame. The last the inside. Over the years I six years, I've been trained learned how to educate my in prevention, HIV testing family members and loved and outreach, and in STI and ones about the importance hepatitis C education. I am of safer sex and treatment.” now on the South Carolina Dine Out. Donate. —JACK R MILLER HIV Planning Council as a voting member and am chair Support Local. End HIV. “I was wearing an HIV Long- of the DHEC HPC Positive Term Survivor T-shirt as we Advocacy Committee. tpan.com/diningout were coming back from Through this advocacy work, I AIDS Watch. We stopped for bring information back to my gas in a town that was half community. By being open, the size of Mayberry, RFD. I I hope others will see they CHICAGO SPONSORS wasn't even thinking about don’t have to follow the same the shirt when I went inside path I did. It's getting better the gas station to get some in the South, but we still have coffee. This rough-looking a go way to go.” guy, the stereotype of a back- —KELLY JOHNSON woods Bubba, starts walking towards me. It was then that “Since becoming positive in I realized that my choice of 1985, I have always been hon- Tom Skilling shirt might not have been a est about my status. Every good idea. Bubba stopped in time someone tried shaming front of me, asked me how me, I would educate them as long I had been HIV-positive. much as possible. Education I told him 34 years. He pro- stops stigma.” ceeded to tell me about his —SIMON JOHN COYLE

POSITIVELYAWARE.COM/SUBSCRIBE | NOV+DEC 2020 53 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.