POZ June 2022

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London Calling

Life after being cured of HIV

Adam Castillejo

A SMART+STRONG PUBLICATION JUNE 2022 POZ.COM $3.99

H E A L T H ,

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London Calling

Life after being cured of HIV

Adam Castillejo

Adam Castillejo, aka the London Patient, advocates for a widely applicable HIV cure.

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HELP PROTECT YOUR HEALTH. There is no cure for HIV, but find out how treatment helps make it possible to live a healthier life.

SEE INSIDE

CONTENTS

EXCLUSIVELY ON

POZ.COM

Cured of HIV, Adam Castillejo wants to inspire hope in others.

POZ BLOGS Our roster of bloggers spans the diversity of the HIV community. Go to poz.com/ blogs to read varying points of view from people living with the virus as well as from HIV-negative advocates.

Join the conversation in the comments section. Visit the blogs to find hope and inspiration from others.

D

POZ OPINIONS

#UNDETECTABLE The science is clear: People who have an undetectable viral load don’t transmit HIV sexually. In addition to keeping people healthy, effective HIV treatment also means HIV prevention.

Go to poz.com/undetectable for more.

POZ DIGITAL Scan the QR code (left) with your smartphone camera or go to poz.com/digital to view the current issue and read past issues online.

22 LIFE AFTER HIV Adam Castillejo, aka the London Patient, continues to advocate for a widely applicable HIV cure. BY GABRIEL ARANA 26 METH STILL KILLS Crystal methamphetamine continues to ensnare gay men, distorting their sex lives and increasing their HIV risk. BY MARK S. KING 3 FROM THE EDITOR

14 CARE AND TREATMENT

London Calling

Who has the highest lifetime HIV risk?

• are home HIV tests the wave of the future? • ADAP is not keeping pace with a changing HIV epidemic • HIV care in jails doesn’t measure up

4 POZ Q+A Long-term survivor Vishwas Pethe, computer programmer and author of Gay Crow, shares his secrets to happiness.

16 RESEARCH NOTES

6 POZ PLANET

Pride and prevention • The Reunion Project’s virtual tool kit to help long-term survivors • Everyday

PrEP benefits • long-acting lenacapavir continues to show promise • has a New York woman been cured? • heart risk for people living with HIV

10 VOICES

19 BASICS

The Elizabeth Glaser Pediatric AIDS Foundation explains “Why Including Women in HIV Research Matters,” and Madeline C. Montgomery, MPH, touts “Centering Sexual Satisfaction in the PrEP Conversation.”

HIV and aging

12 SPOTLIGHT A roundup of recent community events

20 NUTRITION & FITNESS

Mushroom and egg toast • the benefits of exercise

32 HEROES While fighting cancer, artist and activist Hunter Reynolds continues to create.

POZ (ISSN 1075-5705) is published monthly except for the January/February, April/May, July/August and October/November issues ($19.97 for an 8-issue subscription) by Smart + Strong, 157 Columbus Avenue, Suite 525, New York, NY 10023. Periodicals postage paid at New York, NY, and additional mailing offices. Issue No. 260 POSTMASTER: Send address changes to POZ/Smart + Strong, 157 Columbus Avenue, Suite 525, New York, NY 10023. Copyright © 2022 CDM Publishing, LLC. All rights reserved. No part of this publication may be reproduced, stored in any retrieval system or transmitted, in any form by any means, electronic, mechanical, photocopying, recording or otherwise without the written permission of the publisher. Smart + Strong® and POZ® are registered trademarks of CDM Publishing, LLC.

COVER AND THIS PAGE: (CASTILLEJO) JON ATTENBOROUGH; (MEGAPHONE AND SPEECH BUBBLES) THINKSTOCK; (MAGNIFIER) ISTOCK

Advocates, researchers, politicians, thought leaders and folks just like you all have ideas worth sharing.

Go to poz.com/ opinions to read about topics such as living with HIV, improving care and treatment, increasing prevention efforts and fighting for social justice.

FROM THE EDITOR

London Calling

EDITOR-IN-CHIEF

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I

HAD DONE ONLY A BIT OF international traveling up until my 30s. I visited relatives in Cuba when I was younger. I had the privilege of attending a summer exchange program in Japan during high school. I also went to Mexico and Canada a few times.

That said, I hadn’t yet gone to Europe.

Feeling lucky to have survived HIV into my 30s, I decided to break that barrier. For me, the obvious choice for my first time across the pond was London. As a Cuban American, going to Cuba was a sort of homecoming.

As a native New Yorker, seeing London was like looking at a mirror image.

So it has been great for me to once again think about London fondly—this time as the home of Adam Castillejo, aka the London Patient, the second person certified as cured of HIV. Both the late Timothy Ray Brown, the first person cured of the retrovirus, and Adam were cured the same way—through a bone marrow transplant to treat leukemia. The transplants had the same genetic mutation that allows the body to effectively block infection by HIV. But the excitement of finding a cure for HIV has been accompanied by the reality that the cure is simply not widely applicable.

The financial costs and very serious health risks make this route impractical at best.

Nonetheless, the fact remains that people can be cured of HIV. That knowledge alone is worth its weight in gold, at least to me.

Knowing it is possible should give everyone still living with HIV hope that a cure for each of us isn’t a pipe dream. Indeed, that is the message that Adam wants to share. Go to page 22 to read about his life after HIV. In addition to Timothy and Adam both having been cured of HIV, they also share another connection—being proud members of the LGBTQ community. In this special issue about LGBTQ people, we spotlight many others from the community who have been involved in noteworthy efforts on behalf of people living with HIV.

One of them is Hunter Reynolds, a deeply gifted and prolific artist. He’s been documenting his journey as a gay man living through the AIDS epidemic since he tested HIV positive.

He’s an early member of ACT UP and a cofounder of its affinity group ART+ Positive, which battles homophobia and censorship in the arts. Go to page 32 to read more.

Another example is Vishwas Pethe, a longterm HIV survivor and an author. When we meet him in his memoir, Gay Crow, he is 62 and ready to end his life—he was diagnosed with AIDS in 1986 and non-Hodgkin lymphoma in 2001 and suffered a debilitating stroke and fall in 2016. Go to page 4 for our Q&A with Vishwas and some sage advice.

Although addiction affects all kinds of people, LGBTQ folks are especially at risk. One drug in particular, crystal methamphetamine, unfortunately continues to ensnare gay men, distorting their sex lives and increasing their HIV risk. Go to page 26 to read more about how meth still kills—and how to get help.

ORIOL R. GUTIERREZ JR. EDITOR-IN-CHIEF editor-in-chief@poz.com

Want to read more from Oriol? Follow him on Twitter @oriolgutierrez and check out blogs.poz.com/oriol.

poz.com JUNE 2022 POZ 3

POZ Q+A

BY TRENT STRAUBE

Clockwise from far left: Vishwas and his husband, Joe, in front of Vishwas’s art in 2021; Vishwas (center) with his brother and mom in 1983; his memoir; Joe and Vishwas in DC in 1993

ADVICE FROM THE GAY CROW

W

HEN WE FIRST MEET VISHWAS PETHE IN HIS MEMOIR, Gay Crow, he is 62 and ready to end his life—not because he’s depressed or angry but because he’s “tired of fighting.” In 2016, the Indian-American computer engineer (he was one of the original developers of Grindr) suffered a debilitating stroke and fall. What’s more, these setbacks arrived after he’d been diagnosed with AIDS in 1986 and then non-Hodgkin lymphoma, a type of cancer, in 2001. That’s a lot of fighting.

At the insistence of his partner of 30 years, husband Joe Hennessy, Pethe agrees to see a psychologist. The conversations between Pethe and his therapist, Carl, constitute the bulk of book. Through this unconventional Q&A format, Pethe’s amazing life story unfolds—growing up in India; coming out; surviving his first partner, who was lost to AIDS; enjoying career successes; marrying Hennessy; and much more. Along the way, Pethe and his therapist matter-of-factly explore deep philosophical questions about what constitutes a happy and healthy life. POZ spoke with Pethe, who turns 67 in June and lives in Falls Church, Virginia, via email and Zoom.

The conversation has been lightly edited for length and clarity.

First off, tell us about the book’s title.

Gay Crow is a pun on the famous Indian childhood story called “Happy Crow.” The gist of the story is that there was a crow living in the jungle who was always happy.

A king hears about it and decides to make him unhappy. He tells his soldiers to capture the crow and put him through different punishments. But the crow finds something in each circumstance to be happy about. So finally, the king lets the crow go and says we should all be happy like the crow. My uncle called me a happy (gay) crow watching me play with others when I was a kid because I was always happy.

4 POZ JUNE 2022 poz.com

What were your goals—for yourself and others—in writing the memoir?

I noticed that being happy made me forget the bad things that come by in life. I always found something to be happy about and never remembered the bad things. When I talked to the therapist, it became clear to me that it might be a secret to my sur vival. Then I thought, Why not document this and let others in similar situations find a way out? My memoir can help people coming out, adjusting to a different culture or dealing with health problems.

What was your rationale behind considering suicide?

The left side of my brain was gone, my right arm was not working, my right leg was not working and my speech was disabled. My last fall put my left arm in plaster, and my jaw was twisted. I was on a liquid diet. My sharp mind and intellect were gone. This is on top of the years I had spent fighting AIDS. I was tired of fighting. That’s why I was choosing suicide. What kept me from doing that was my love for my partner. I imagined

ALL IMAGES: COURTESY OF VISHWAS PETHE

Long-term HIV survivor and author Vishwas Pethe shares his secrets to happiness.

what his life would be with me gone. I wanted to spare him the trouble. What changed my mind is that Carl kept up my interest in psycholog y and that bought time while my condition improved to the point I could manage it. At no point was I depressed.

Your HIV journey has been challenging as well. In 2006, you developed resistance to HIV meds and were diagnosed with Kaposi sarcoma—an AIDS-related cancer—until you got into an Isentress (raltegravir) trial, which gave you a second life. How is your HIV now?

My viral load has been undetectable since 2006. But after having a number of treatments and each having its side effects, it has taken a toll on my system.

I have osteoporosis [bone loss, a potential side effect of certain HIV meds], adrenal insufficiency, hypogonadism [low testosterone], weakness in the right ankle (a result of the fall in 2001) and other age-related problems.

Is there a specific outlook or physical trait that helped you persevere?

My gay crow attitude is the thing that kept me going. As I look back on my life, I only remember what a wonderful life I had. I take notice of the negative things and deal with them, but they don’t stay in my mind once they are gone.

That sounds like sthitapradnya, which you mention in the book. How would you describe this?

Sthitapradnya has various meanings.

The one I go by is the state of mind that is not disturbed by good things, nor is it disturbed by bad things. You separate the mind as the inner mind and the outer mind. The outer mind reacts to good or bad things, but the inner mind stays stable. It has helped me handle the HIV and the stroke as things that happened outside but didn’t affect me inside.

When I picked up your book, I expected to learn more about a Hindu view of the LGBTQ and HIV experiences, only to discover you’re an atheist.

First of all, you must understand that Hinduism has nothing to do with God. You can be a God-fearing/-loving Hindu

or an atheist Hindu. As someone said, Hinduism is not a religion but a way of life. Many Hindus don’t believe in God. So my being a Hindu did not affect my being gay, but the societal attitudes did.

I knew that society would not understand it, so I kept it my secret. Coming out was the same thing. I only came out to people that I thought could handle it, though I never lied about it.

else caged in marriage. If he meets and desires someone else, let him go. He was never yours anyway. I got married to receive the 1,000-plus benefits— financial and otherwise.

I get the impression that you’ve not struggled with hang-ups and shame regarding being gay.

You worked on the original development team doing coding for Grindr, the gay dating app. You mention that folks thank you for that contribution to the gay community. What would you say to someone who counters that the app promotes hook-up culture and devalues face-to-face interactions?

Yes, that is very correct. I have never met anyone that shamed me for my sexual preferences. It’s surprising that not one person [I know] has any problem with the gay thing, including my extended family and friends here and in India.

Grindr made connecting with other gay men easier [and more normal]. It does facilitate the hook-up culture, but it does not devaluate face-to-face interaction. With these apps, you meet new people, which would have been impos-

“Being happy made me forget the bad things that come.”

You’re up-front about having open relationships with your long-term partners. Have you received any pushback about that in the age of marriage equality and heteronormative, monogamous relationships?

All men (not women, I am not qualified to analyze them) are promiscuous (in a good way). Men want security and freedom. Having a relationship gives them security, but they lose freedom. Being single gives them freedom but no security. An open relationship achieves both. I have not had any pushback from anyone. A more heteronormative, monogamous gay “lifestyle” is a fantasy. I don’t know any gay person who follows that. In every relationship that I have seen, there is cheating. So take the cheating out of the relationship. If you find it beneficial to you and your partners to have a closed relationship, then do that. But you shouldn’t keep someone

sible otherwise. Those who don’t want them are free to avoid the apps.

Your therapist noted that you thrive when you have a challenge. For example, you took up painting at his suggestion, even when you had to use your nondominant hand because of the stroke. What’s the next project?

Dealing with the aftereffects of a stroke takes up my time. But painting gave some meaning to life. Meanwhile, since the stroke, [my husband and I] have become world travelers. And I’m thinking of writing a new book.

Any last words of advice?

Don’t let your HIV status get in the way of what you want to do. Being HIV positive is just a thing that you deal with, like many conditions other people deal with. Don’t dwell on it. Maybe a gay crow attitude will help you. ■

poz.com JUNE 2022 POZ 5

POZ PLANET

BY TRENT STRAUBE

Pride & Prevention LGBTQ and HIV news June is Pride Month, a time to celebrate and support the LGBTQ community, a population heavily impacted

by HIV. In 2019, gay and bisexual men represented 56% of the 1.2 million people living with HIV in the United States; transgender women and Black and brown Americans are also disproportionately affected. Here’s a roundup of recent headline-making challenges and reasons to wave your rainbow flag.

Equality wins. Gender-neutral passports are now available. Also, thanks to lawsuits filed by service members living with HIV, including Sergeant Nick Harrison, a federal court struck down the Pentagon’s discriminatory HIV policies—service members can no longer be discharged or denied promotions because they have HIV. HEALTH CARE PrEP for all. The Biden-Harris administration’s proposed budget for 2023 included not only a funding boost to the Ending the HIV Epidemic in the United States initiative but also the investment of $9.8 billion to expand access to PrEP, or pre-exposure prophylaxis, which refers to pills or injections taken to prevent HIV. The queer advocacy group PrEP4All— including Kenyon Farrow—applauded the move but called for strategic planning that serves populations with limited access to PrEP. Gay blood drive. Currently, a man cannot donate blood if he has had sexual contact with another man in the past three months, even if he’s monogamous.

Would a questionnaire better assess a potential donor’s risk? The ADVANCE (Assessing Donor Variability and New Concepts in Eligibility) study hopes to find out, and eight LGBTQ community centers are participating in the research.

Measuring queer health care. The LGBTQ advocacy group Human Rights Campaign released its 15th annual Healthcare Equality Index. The results?

“Diverse health care facilities across the U.S. are making tremendous strides toward LGBTQ+ patientcentered care,” the index notes. “In unprecedented numbers, they are changing key policies, implementing best practices and training their staff.”

ENTERTAINMENT Television is more queer and less HIV-friendly. For example, of the 775 regular characters on scripted prime time TV shows in the 2021–2022 season, 92 (11.9%) were LGBTQ—a record high, according to the LGBTQ advocacy group GLAAD. Representation also climbed on cable series. However, the number

6 POZ JUNE 2022 poz.com

of characters living with HIV decreased from three main characters (all on Pose) to two minor ones: Michael on the final season of Netflix’s Dear White People and Sai on NBC’s Ordinary Joe.

Clockwise from top: Denise Spivak of CenterLink and the ADVANCE blood donor study; Lil Nas X (center) at THRIVE SS; Donja R. Love of i need space; Sergeant Nick Harrison; Kenyon Farrow of PrEP4All

From stage to screen. Playwright Donja R. Love, who graced the cover of last year’s POZ 100 issue, wrote and directed the Black LGBTQ digital series i need space, which you can watch (free!) on Broadstream.

Told through short video chats, which include a transgender man living with HIV (played by Ja’Mel Ashely), the seven-episode story, Love says, “explores loss, loneliness, love and healing.”

Rock stars of HIV fundraisers. Sir Elton John’s 30th annual Academy Awards Viewing Party—cohosted by Billy Porter, Eric McCormack, David Furnish and Lady Gaga—raised a record-breaking $8.9 million for the Elton John AIDS Foundation. And Lil Nas X has now raised over $500,000 through a “baby registry” linked to his debut album, Montero, to help the Gilead COMPASS Initiative fight HIV in the South. Bravo!

(PRIDE FLAG) ISTOCK; (SPIVAK) YOUTUBE/ADVANCE STUDY; (LIL NAS X) COURTESY OF THRIVE SS; (LOVE) COURTESY OF THE NEW GROUP/MONIQUE CARBONI; (HARRISON) COURTESY OF LAMBDA LEGAL; (FARROW) COURTESY OF KENYON FARROW

POLITICS Don’t say gay or trans. Homophobia, racism, stigma and discrimination put queer people at higher risk of acquiring HIV and not getting the care they need. So the growing popularity of anti-LGBTQ bills is alarming.

Legislation usually targets queer youth, such as the so-called Don’t Say Gay law in Florida and numerous bans on transgender student athletes and genderaffirming care for youth.

Tool Time!

EVERYDAY

(TOOLBOX AND COMPUTER) ISTOCK; (ROUNDTABLE PARTICIPANTS) COURTESY OF THE REUNIOIN PROJECT; (HIV.GOV) COURTESY OF HIV.GOV

Creating a virtual tool kit for long-term survivors When members of The Reunion Project, a network of long-term HIV survivors, began discussing which subject they wanted to explore in their next webinar, they realized “there were just too many topics,” recalls Heather O’Connor, the group’s program coordinator. So instead of narrowing it down, they expanded it into a series. And thus, The Long-Term Survivor Toolkit Webinar Series was launched.

The webinars take place on Zoom (you must preregister), and the resulting videos are archived on ReunionProject.net, where anyone can watch anytime. “Each webinar will feature an expert presenter on the covered subject as well as panelists and community members,” O’Connor says. “The intent is to explore and share the lived experiences among long-term survivors of HIV and immediately follow up with resources and opportunities for discussion on the subject within a very intentional safe space.”

The series debuted at the end of April; other webinars are slated every other month. (At press time, the first webinar was not yet posted.)

Founded in 2015, The Reunion Project is a “national alliance of HIV long-term survivors that serves as a container for convening and connecting individuals and communities,” according to its website. The group hosts oneand two-day summits, or town halls, across the nation. The format went virtual due to COVID-19, and you can watch the resulting videos on the group’s website—for example, Mark S. King and Tammy Kinney discuss sex

and dating, and David Fawcett, PhD, provides tools for bolstering resilience. Look for the in-person summits to return later this year.

“A lot of long-term survivors are reliving trauma during this [COVID-19] pandemic,” O’Connor notes. “We have been isolated, we have experienced loss and we have felt out of control. It’s time to check in with each other, convene in a safe space and talk about some of these issues that arise for each of us.”

Who, exactly, is a long-term survivor? The group’s definition is expansive, O’Connor says, and includes people who have been living with HIV for 10 years or more, those who were HIV positive before effective treatment became available in 1996 and people who have progressed through different eras of their life while living with HIV—for example, from young adulthood to middle age and beyond. Some members were born with HIV and, despite several decades with the virus, are still relatively young. What’s more, O’Connor notes, HIV-negative allies are welcome to join and participate.

“There are so many great resources within our community—so much expertise, so much lived experience,” O’Connor says. “The Reunion Project felt it was time for us to take a deep dive into all of these resources and preserve them in a way that they are easily accesParticipants at The sible and relevant to Reunion Project’s 2018 all who seek guidance national roundtable at Rancho Mirage, Calif. or need support.”

These dates represent milestones in the HIV epidemic. Please go to poz.com/ aidsiseveryday to learn more about the history of HIV/AIDS.

BY JENNIFER MORTON

June

5

HIV LONG-TERM SURVIVORS AWARENESS DAY

5

AIDS.gov, the U.S. government’s main source of information about HIV and AIDS, changes its name to HIV.gov.

(2017)

27

NATIONAL HIV TESTING DAY

poz.com JUNE 2022 POZ 7

IMPORTANT FACTS FOR BIKTARVY®

This is only a brief summary of important information about BIKTARVY and does not replace talking to your healthcare provider about your condition and your treatment.

(bik-TAR-vee)

MOST IMPORTANT INFORMATION ABOUT BIKTARVY

POSSIBLE SIDE EFFECTS OF BIKTARVY

BIKTARVY may cause serious side effects, including:

BIKTARVY may cause serious side effects, including: ` Those in the “Most Important Information About BIKTARVY” section. ` Changes in your immune system. Your immune system may get stronger and begin to fight infections that may have been hidden in your body. Tell your healthcare provider if you have any new symptoms after you start taking BIKTARVY. ` Kidney problems, including kidney failure. Your healthcare provider should do blood and urine tests to check your kidneys. If you develop new or worse kidney problems, they may tell you to stop taking BIKTARVY. ` Too much lactic acid in your blood (lactic acidosis), which is a serious but rare medical emergency that can lead to death. Tell your healthcare provider right away if you get these symptoms: weakness or being more tired than usual, unusual muscle pain, being short of breath or fast breathing, stomach pain with nausea and vomiting, cold or blue hands and feet, feel dizzy or lightheaded, or a fast or abnormal heartbeat. ` Severe liver problems, which in rare cases can lead to death. Tell your healthcare provider right away if you get these symptoms: skin or the white part of your eyes turns yellow, dark “tea-colored” urine, light-colored stools, loss of appetite for several days or longer, nausea, or stomach-area pain. ` The most common side effects of BIKTARVY in clinical studies were diarrhea (6%), nausea (6%), and headache (5%).

` Worsening of hepatitis B (HBV) infection. Your

healthcare provider will test you for HBV. If you have both HIV-1 and HBV, your HBV may suddenly get worse if you stop taking BIKTARVY. Do not stop taking BIKTARVY without first talking to your healthcare provider, as they will need to check your health regularly for several months, and may give you HBV medicine.

ABOUT BIKTARVY BIKTARVY is a complete, 1-pill, once-a-day prescription medicine used to treat HIV-1 in adults and children who weigh at least 55 pounds. It can either be used in people who have never taken HIV-1 medicines before, or people who are replacing their current HIV-1 medicines and whose healthcare provider determines they meet certain requirements.

BIKTARVY does not cure HIV-1 or AIDS. HIV-1 is the virus that causes AIDS. Do NOT take BIKTARVY if you also take a medicine that contains: ` dofetilide ` rifampin ` any other medicines to treat HIV-1

BEFORE TAKING BIKTARVY Tell your healthcare provider if you: ` Have or have had any kidney or liver problems,

including hepatitis infection. ` Have any other health problems. ` Are pregnant or plan to become pregnant. It is not known if BIKTARVY can harm your unborn baby.

Tell your healthcare provider if you become pregnant while taking BIKTARVY. ` Are breastfeeding (nursing) or plan to breastfeed.

Do not breastfeed. HIV-1 can be passed to the baby in breast milk.

Tell your healthcare provider about all the medicines you take: ` Keep a list that includes all prescription and over-the-

counter medicines, antacids, laxatives, vitamins, and herbal supplements, and show it to your healthcare provider and pharmacist.

` BIKTARVY and other medicines may affect each other.

Ask your healthcare provider and pharmacist about medicines that interact with BIKTARVY, and ask if it is safe to take BIKTARVY with all your other medicines.

These are not all the possible side effects of BIKTARVY. Tell your healthcare provider right away if you have any new symptoms while taking BIKTARVY. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.FDA.gov/medwatch or call 1-800-FDA-1088.

Your healthcare provider will need to do tests to monitor your health before and during treatment with BIKTARVY.

HOW TO TAKE BIKTARVY Take BIKTARVY 1 time each day with or without food.

GET MORE INFORMATION ` This is only a brief summary of important information

about BIKTARVY. Talk to your healthcare provider or pharmacist to learn more.

` Go to BIKTARVY.com or call 1-800-GILEAD-5 ` If you need help paying for your medicine,

visit BIKTARVY.com for program information.

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VOICES BLOGS AND OPINIONS FROM POZ.COM

INCLUDING WOMEN In an opinion piece titled “Why Including Women in HIV Research Matters,” the Elizabeth Glaser Pediatric AIDS Foundation lays out concerns about research and offers solutions for inclusion. Below is an edited excerpt.

10 POZ JUNE 2022 poz.com

were the other women at the table, and why were there no women in the clinical trials?

Cameron recalls later approaching the lead investigator of the research initiative and asking why the clinical trials lacked women when there are such unique gendered biological and social factors to consider in developing a successful cure for HIV. The answer she got was, “It’s just too hard.”

Why Is It Important to Engage Women Living With HIV in Research?

Resource-rich countries conducted initial HIV treatment research with a focus on gay men, the predominant HIV risk group in those countries.

However, the greatest burden of the HIV pandemic has been borne by resource-limited countries, where HIV manifests primarily among heterosexual people, over half of them women.

“Globally, if one focuses on young women ages 15 to 24 years, the risk of acquiring HIV infection is twice that of young men of similar age,” says Lynne Mofenson, MD, senior HIV technical adviser to EGPAF. “This is most pronounced in sub-Saharan Africa, where young women, despite representing just 10% of the population, accounted for 25% of new HIV infections in 2020 compared to 8% in young men.”

Yet women still represent only a fraction of HIV research participants.

This means existing treatment guidelines for HIV-related medications and interventions lack sufficient data on drug dosage and safety for more than half of people living with HIV globally, simply because those guidelines were developed for and researched in men.

“It is evident that gender has to be a crucial consideration in medical research for prevention, treatment and a possible cure for HIV,” Cameron says, “and yet women continue to be underrepresented without a real investment or capacity building for research.”

How to Move Forward Despite the tremendous efforts and progress made with respect to HIV over the past 30 years, we are still a long way from having sufficient evidence regarding many HIV interventions for women, given their unique and diverse biological and social contexts.

“We need to continue to advocate for women being included and involved in research,” Cameron says. “Researchers have to remember that they may be interacting with communities that have [harmful] historical and social contexts with academic institutions and people.

“To that end, here are the three key terms I have for researchers looking to engage people living with HIV and women in research: cultural competency, cultural humility and reflexivity.” ■

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HEN ELIZABETH GLASER Pediatric AIDS Foundation (EGPAF) Ambassador Martha Sichone Cameron, MPH, walked into a conference room in 2012 as a member of the consumer advisory board for an HIV cure research initiative, she noticed that she was the only woman in the room. She soon discovered that women were underrepresented at every level of the research initiative, including clinical trials.

“Everybody else [on the board] was gay and white, which was OK, but not OK if the cure is going to be for everybody,” Cameron says. “I became concerned and frustrated because the investigators were not invested in including women.”

Cameron was born and raised in Zambia. In 2003, after losing family, friends and community members to AIDS-related illnesses in the early years of the epidemic, she discovered that she, too, was living with HIV. Beyond her decades of lived experience, Cameron had had an extensive career serving communities of women and children living with HIV in Zambia by the time she moved to the United States, where she earned a master’s degree in public health. In 2012, she was the director of prevention at an AIDS service organization in Washington, DC, so she was beyond qualified to serve on this advisory board—but where

CENTERING PrEP In an opinion piece titled “Centering Sexual Satisfaction in the PrEP Conversation,” Madeline C. Montgomery, MPH, shares what she and her colleagues learned when they asked queer men about pre-exposure prophylaxis.

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HEN WAS THE LAST TIME you talked to your doctor about your sex life? Not just the bare bones, but things like how you open up to your partner during sex, how much you give and receive and how your orgasms feel.

Maybe it feels too personal. Maybe it doesn’t seem relevant. But maybe it could help prevent HIV. You’ve heard of PrEP—pre-exposure prophylaxis, the use of antiretroviral drugs to prevent HIV. PrEP is extremely effective. But the medical field hasn’t quite figured out how to get PrEP into the hands of people who need it. And part of this may be that conversations about PrEP leave out one important component: sex.

Our heteronormative, sexually repressed society prefers not to talk about two men having sex. Historically, the medical response to HIV has focused on pathologizing queerness rather than embracing people’s actual personal sexual experiences. But what would it look like if we centered sexual satisfaction in the conversation about PrEP? What if we talked about how PrEP actually affects people’s sex lives?

My colleagues and I set out to answer this question by talking to queer men in PrEP care at two clinics in New England.

We asked these 108 men 20 questions about their sexual satisfaction both before and after starting PrEP. Men were asked to rate aspects of their sex lives, like “the variety of my sexual activities,” “my mood after sexual activity” and “my emotional opening up in sex,” on a scale from 1 (“not at all satisfied”) to 5 (“extremely satisfied”).

“Conversations leave out one important component.”

Our findings were conclusive: Queer men are more satisfied with their sex lives after starting PrEP—75% of men surveyed reported an increase in sexual satisfaction. The item where men reported the biggest increase in satisfaction was “my ‘letting go’ and ‘surrender.’” And 73% of the men surveyed said PrEP increased their quality of life.

Does this actually matter for HIV prevention? Well, yes. We already knew that sexual satisfaction is a big driving factor for people in other sexual behav-

iors, like deciding not to use condoms.

Increased sexual satisfaction may also motivate people in a positive direction— deciding to go on PrEP. Leaving sexual satisfaction out of PrEP promotion efforts is a missed opportunity to reach people who would benefit from taking PrEP and haven’t been motivated by other messaging. Medical providers should talk to their patients about the potential benefits of PrEP for their sex lives.

Public health organizations should center sexual satisfaction in their activities promoting PrEP. And all of us should push to move the field of HIV prevention forward, in the direction of a queerer, more sex-positive future. ■ Madeline C. Montgomery, MPH, is a doctoral candidate in the Department of Behavioral and Social Sciences at the Brown University School of Public Health.

Original paper: Madeline C. Montgomery; Jacqueline Ellison; Philip A. Chan; Laura Harrison; Jacob J. van den Berg (2021). “Sexual satisfaction with daily oral HIV pre-exposure prophylaxis (PrEP) among gay and bisexual men at two urban PrEP clinics in the United States: An observational study.” Sexual Health, 14(8), 319–326.

poz.com JUNE 2022 POZ 11

SPOTLIGHT

BY JOE MEJÍA

BACK ON THE SCENE

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The relaxing of COVID-19 pandemic restrictions across the country in late winter—thanks to a decline in coronavirus infections, hospitalizations and deaths—allowed several HIV/AIDS service and research organizations to return to the business of raising funds and awareness and delivering services in person. And with International Women’s Day, the International Transgender Day of Visibility and multiple highprofile galas all taking place in March, the timing couldn’t have been better for folks to get back out and about.

There’s no telling how long this respite from the worst of the pandemic will last, but one thing is certain: The alwaysresilient HIV community will face head-on whatever future challenges come its way. But for now, it’s great to be able to celebrate, commemorate, serve, support and protest (and sometimes just show up) for one another in the flesh.

1. Billy Porter, Eric McCormack, 3 David Furnish and Lady Gaga cohosted the Elton John AIDS Foundation’s Academy Awards Viewing Party, which raised $8.6 million. (The Rocket Man himself joined via satellite from his tour.) 2. Director Leo Rocha, Pedro Zamora’s sister Mily Zamora and codirector Bill Horner attended a Miami Film Festival screening of the documentary Keep the Cameras Rolling: The Pedro Zamora Way, a chronicle of the life and activism of the Real World star, who died of AIDS-related illness in 1994 and would have turned 50 this year. 3. In honor of Social Work Month, observed every March, the social workers and case managers of AIDS Alabama showed their community what an HIV advocate looks like. 4., 5. Housing Works advocates headed to Albany to urge New York Governor Kathy Hochul to provide statewide rental assistance for people with HIV and AIDS. Data show that stable housing is key to staying undetectable.

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6. , 7. Keith Richards (left, center) 6 and Melissa Etheridge (right) were just a couple of the rockers who showed their support for God’s Love We Deliver at the nonprofit’s benefit concert Love Rocks NYC at the Beacon Theatre.

8. The TransLatin@ Coalition, the largest trans-led nonprofit in LA, partnered with Keck Medicine of USC to streamline the development and delivery of specialized, affirming health care for trans, gendernonconforming and intersex people. 9. San Diego’s HIV Funding Collaborative, a project of the Human Dignity Foundation, awarded Christie’s Place $10,000, which the nonprofit will use to grow its Coordinated Support Center and continue to boost the resilience of women, children and families affected

by HIV. 10. The Aliveness MN Project received a $10,000 gift from the WAC Foundation, which will help 10 support the organization’s HIV/ AIDS services as well as Tea Time, its new peer-led safe space for trans women and trans femme folks. 11., 12. Jay Ellis, star of HBO’s Insecure, was one of the many celebs who attended amfAR’s, Palm Beach, Florida, gala fundraiser honoring Tommy Hilfiger.

Meanwhile, Christina Aguilera serenaded guests at the event with three of her hits, including “Fighter.” 13. The women of Iris House, along with AIDS Healthcare Foundation, commemorated International Women’s Day, observed each year on March 8, by honoring the women who have dedicated their lives to fighting HIV/AIDS.

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Send your event photos to POZ at website@poz.com or tag us on Facebook, Instagram or Twitter. For a list of community events, visit poz.com/calendar.

poz.com JUNE 2022 POZ 13

CARE AND TREATMENT

BY HEATHER BOERNER

Assuming 2017–2019 Diagnosis Rates Continue 200 187 180 171 160

RISK (1 IN N)

140

120

116

100 89 80

76

60 50 40 27 20

0 TOTAL

Black

Hispanic

NHOPI

AI/AN

White

Asian

RACE/ETHNICITY AI/AN= American Indian/Alaskan Native, NHOPI= Native Hawaiian/Other Pacific Islander Adapted from Singh et al. CROI 2022.

WHO HAS THE HIGHEST LIFETIME HIV RISK? When it comes to who has the highest lifetime risk of acquiring HIV, that dubious honor goes to Black Americans, with Latinos not far behind, according to research presented at the annual Conference on Retroviruses and Opportunistic Infections.

Sonia Singh, PhD, and colleagues from the Centers for Disease Control and Prevention combined data on new HIV diagnoses and non-HIV-related deaths with census data from the United States to create a map of where—and for whom—HIV rates are highest.

The researchers projected that 1 in 76 men could be diagnosed with HIV over the course of their lifetime, but this varied greatly across groups: 1 in 27 Black men and 1 in 50 Latino men could be expected to ever acquire HIV, compared with 1 in 171 white men and 1 in 187 Asian men. While 1 in 309 women overall are projected to ever be diagnosed with HIV, this rose to 1 in 75 Black women and 1 in 287 Latina women, compared with 1 in 874 white women and 1 in 1,298 Asian women. By geography, 9 out of the 10 areas with the highest HIV risk were in the South.

Given all this, it’s hard to believe that the overall lifetime risk of acquiring HIV has actually decreased since the last time this analysis was conducted, in 2014—a drop of 11%.

“Every person who could benefit needs to have access to the highly effective prevention tools that are available,” Singh says. “To end the HIV epidemic, we need to provide equitable access to people who could most benefit.”

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Are Home Tests the Wave of the Future?

During the COVID-19 era, many Americans got used to swabbing their own noses to test for the SARS-CoV-2 coronavirus. In the midst of the pandemic, the Centers for Disease Control and Prevention (CDC) tried a similar approach for HIV testing—and it appears to have been a success.

One in four of the 100,000 free OraQuick home oral HIV tests the CDC sent out went to people who had never been tested for HIV before, CDC epidemiologist Pollyanna Chávez, PhD, reported at the Conference on Retroviruses and Opportunistic Infections. Another third went to people who hadn’t been tested in the last year.

When the researchers broke down the results by demographics, they found that some groups with high rates of HIV were especially well served by the approach. For instance, 81% of the 17-year-olds and 46% of people ages 18 to 24 who requested tests had never been tested before.

What’s more, Black and Latino gay and bisexual men, who account for a majority of new HIV diagnoses, made up more than half of those ordering home tests: 32% were Latino, of whom 19% had never tested before, and 16% were Black, of whom 20% hadn’t tested before.

A quarter of all home tests went to cisgender women, 43% of whom were Black. Transgender and genderqueer people accounted for nearly 5% of those ordering tests.

Home testing may be the wave of the future for other conditions as well. A George Washington University program that sent home tests for the cancer-causing human papillomavirus (HPV) to cisgender women living with HIV in Washington, DC, found that the tests detected the virus in 25 of 40 women who used the tests.

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Lifetime Risk of an HIV Diagnosis Among Males

ADAP NOT KEEPING PACE WITH A CHANGING HIV EPIDEMIC The good news is that the AIDS Drug Assistance Program (ADAP), which provides medications free of charge to low-income people with HIV, now serves nearly one in four people living with the virus in the United States. The bad news is that the state-administered programs, which receive both federal and state funding, do not reflect what the HIV epidemic looks like today.

Kathleen McManus, MD, of the University of Virginia at Charlottesville, and colleagues looked at ADAP data collected by the National Association of State and Territorial AIDS Directors between 2008 and 2018. During that time, overall ADAP enrollment rose from 14% to 23% of people living with HIV. ADAP use appears to be growing consistently among men and women and among young people. But the data on race and ethnicity show that the program isn’t keeping pace. While Black and Latino people now make up a majority of new HIV diagnoses, ADAP growth has been greater among white people. In 2018, 39% of white people living with HIV were using ADAP, up from 16% . In comparison, 22% of Black people (up from 11%) and 25% of Latino people (up from 9%) benefited from the program.

The results are concerning, says McManus. “We have no reason to think that a specific race/ ethnicity group would have less need for ADAP support, because the eligibility requirements are related to having a low income and being uninsured or underinsured.”

HIV Care in Jails Doesn’t Measure Up Delays, copays and stigma. These are three common experiences for people living with HIV who are detained in county or local jails, according to recent research.

Colleen Blue, MPH, of the University of North Carolina at Chapel Hill, and colleagues interviewed 23 people with HIV in North Carolina who were in custody in local jails or had previously been incarcerated. The participants were mostly middle-aged Black men who had been living with HIV for more than a decade; several had been in jail multiple times.

When the researchers asked folks about their experience of care while in jail, only 30% said it was satisfactory. Nearly two thirds reported delays in getting access to their HIV medications. Most eventually did see providers and receive HIV meds—in some cases thanks to family members bringing them their pills—but not everyone gained access.

Some did not receive HIV care because it required a copay they couldn’t afford. Others elected not to take their medications due to inadequate food to take with their pills or because of gastrointestinal side effects.

Almost all participants kept their HIV status private from other incarcerated people, and some kept it from guards and other jail staff for fear of stigma or violence.

“Jail leadership should review internal policies regarding HIV medications to ensure that PLWH [people living with HIV] can receive them quickly upon entry into jail,” the study authors wrote. “More external resources are needed—for example, from state and local health departments—so that jails can provide timely HIV medications for PLWH incarcerated in their facilities.”

poz.com JUNE 2022 POZ 15

RESEARCH NOTES

BY LIZ HIGHLEYMAN

PREVENTION

TREATMENT

CURE

Another Cure?

Heart Risk

Increased uptake of oral and injectable pre-exposure prophylaxis (PrEP) could dramatically lower new HIV cases. In December 2021, the Food and Drug Administration approved Apretude (long-acting cabotegravir) as the first injectable PrEP option. Studies showed that Apretude administered every other month works even better than daily Truvada PrEP pills. Some people say they find longacting injections more convenient than daily pills, which could increase uptake and adherence. Researchers at Johns Hopkins University developed an epidemiological model to explore how the epidemic would change among gay and bisexual men in 32 communities in the United States as PrEP use increases. Even if nothing changes, current trends suggest that PrEP use would increase by up to 25%, resulting in a 19% drop in new HIV cases. If oral or injectable PrEP use grew by 10% in every jurisdiction, transmissions would drop 33% by 2030, and a 25% increase in PrEP use across the board would reduce new cases by half.

Lenacapavir, a long-acting HIV capsid inhibitor, continues to show promise both for treatment-experienced people and those new to antiretroviral therapy. The CAPELLA trial enrolled people with extensive drug resistance who were currently on treatment but unable to maintain viral suppression.

They started on lenacapavir pills and then switched to injections every six months plus an optimized background regimen. At 52 weeks, 83% had a viral load below 50, and CD4 counts rose by an average of 83 cells. The CALIBRATE trial enrolled previously untreated participants who were randomized to receive oral or injectable lenacapavir plus tenofovir alafenamide/ emtricitabine (Descovy) or a standard three-drug regimen. At 54 weeks, 85% to 90% of lenacapavir recipients had an undetectable viral load. The Food and Drug Administration has put a clinical hold on lenacapavir due to concerns about the glass vials used for the injectable formulation; drugmaker Gilead Sciences is working to resolve the problem.

A woman in New York City has no detectable HIV a year and a half after stopping antiretroviral treatment and four and a half years after undergoing a new type of transplant using HIV-resistant stem cells. The middle-aged, mixed-race woman, who was being treated for leukemia, received a combination of umbilical cord blood cells with a rare mutation known as CCR5-delta32, which blocks HIV from entering cells, and partially matched adult stem cells from a relative.

She remained on antiretroviral therapy for three years post-transplant with an undetectable viral load and no detectable HIV DNA in her immune cells (reflecting the viral reservoir). At that point, she stopped HIV treatment. She has not experienced viral rebound and tests negative for HIV antibodies. Researchers have been unable to find intact HIV in nearly 75 million of her CD4 cells. Time will tell if the New York Patient is cured, but experts caution that this risky procedure will not be appropriate for most people living with HIV.

People living with HIV are at greater risk for myocardial infarction (MI), or heart attacks, than their HIVnegative peers, a disparity that has widened over time.

Previous research showed that HIV-positive people have higher rates of cardiovascular problems. Traditional risk factors (such as smoking), chronic inflammation and antiretroviral medications likely play a role. Researchers looked at changes in MI rates among HIV-positive and HIV-negative members of two large health systems in the San Francisco Bay Area and Boston. During 2005 to 2009, five-year MI incidence was the same in the two groups, at 1.1%. But the rates diverged during 2010 to 2017, rising to 1.2% in the HIV-positive group while falling to 0.9% in the HIV-negative group. This meant that people with HIV had a 60% higher heart attack risk, which appears to be driven more by a reduction in the HIV-negative group than an increase in the HIV-positive group.

These findings underscore the importance of cardiovascular prevention for people living with HIV.

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Lenacapavir

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PrEP Benefits

CONCERNS

BASICS

BY LIZ HIGHLEYMAN

HIV AND AGING Over half of people with HIV and 17% of those newly diagnosed are 50 and older.

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UST OVER HALF OF PEOPLE living with HIV in the United States are ages 50 and older. The HIV population is aging thanks to effective treatment that enables people to live longer, healthier lives. As a result, managing age-related conditions is a growing focus of HIV care. But older people with HIV face some special challenges, including comorbidities, isolation and stigma.

While the proportion of older people living with HIV is rising due to longer survival, new HIV diagnoses in this age group are declining. In 2018, people 50 and older accounted for 1 in 6 people newly diagnosed with the virus (17%).

Of the more than 6,300 older people diagnosed with HIV that year, 71% were men and 29% were women. Among older men, the major risk factor is sex with men (66%), followed by heterosexual contact (21%) and injection drug use (9%).

Among women, heterosexual contact is by far the biggest risk factor (86%), followed by injection drug use (14%).

Older men and women can benefit from pre-exposure prophylaxis (PrEP) using daily pills or injections every other month, but fewer older individuals are using PrEP compared with young adults and middle-aged people. Older individuals may be more hesitant to discuss HIV prevention, and their providers may be less likely to bring it up.

The CDC generally reports statistics for people living with HIV using an age cutoff of 55 and older. In that group, 9 out of 10 people are aware of their HIV status, but older individuals are more likely to be diagnosed at a later stage.

For every 100 older people living with HIV, 71 received some HIV care, 57 were retained in care and 64 achieved viral suppression in 2018. These are all higher than the proportions for HIV-positive people overall.

Older people generally respond well to antiretroviral therapy, although immune recovery can be slower after starting treatment. Some studies have found that older people fare better, in part because they may achieve greater adherence. HIV treatment guidelines are similar for adults of all ages, but it’s even more important for older people to start antiretroviral therapy as soon as possible and to maintain an undetectable viral load.

A segment of older people living with HIV are long-term survivors who acquired HIV early in the epidemic. Some experienced severe immune system damage before effective treatment was available, and some were treated with old antiretrovirals—often alone or in suboptimal combinations—leading to drug resistance. (June 5 is HIV Long-Term Survivors Awareness Day.) Older people living with HIV are more

likely to have comorbidities, or coexisting conditions, that become more common with advancing age, including cardiovascular disease, diabetes, lung disease, liver and kidney problems, cancer, bone loss, frailty and cognitive decline. HIVpositive people tend to develop these conditions at a younger age than their HIV-negative peers, and women with HIV may experience earlier menopause.

This may be due to chronic inflammation, which can persist despite antiretroviral treatment.

As a consequence, many older individuals take multiple medications (known as polypharmacy), potentially leading to drug interactions. In addition, older people are more prone to certain drug side effects. Therefore, antiretroviral regimens for older people should be individually tailored, taking into account comorbidities and other medications.

People living with HIV may face social isolation as they age. Older individuals may also deal with financial insecurity, and they may experience stigma and homophobia in elder-care settings.

Whether you’re newly diagnosed with HIV at an older age or are a long-term survivor, be up-front with your providers about all your health concerns, both physical and mental. And remember: A healthy diet, physical activity, adequate sleep and social connections can maximize quality of life at any age. ■

poz.com JUNE 2022 POZ 19

NUTRITION & FITNESS ADVICE ON DIET AND EXERCISE

WHAT ARE THE BENEFITS OF EXERCISE? The benefits of exercise include the following:

Increased bone strength and muscle mass

So easy and so very good THIS QUICK MUSHROOM AND EGG TOAST RECIPE can be a great breakfast or a satisfying quick lunch. Mushrooms are rich in vitamins and minerals like selenium, an important antioxidant for metabolic health, and the eggs bring a nice hit of protein.

SERVINGS: 4 MINUTES PREP: 20 INGREDIENTS: 8 INGREDIENTS 1 tablespoon olive oil 2 cloves garlic, sliced 2 cups diced portobella mushrooms 1 cup halved cherry tomatoes 1 tablespoon fresh oregano, chopped 4 slices whole grain bread, toasted (use white bread if on bland, low-fiber diets) ¼ cup soft goat or cream cheese, divided 4 soft boiled eggs DIRECTIONS 1. In a wide skillet with a tight-fitting lid, heat the olive oil over medium-high heat. Add the garlic and cook for 3 minutes or until fragrant and beginning to turn golden.

2. Add mushrooms, cherry tomatoes, chopped oregano and a sprinkling of salt and pepper. Cover and cook for 5 minutes. Uncover, stir and cook for another 2 minutes.

Taste for seasoning. Turn off the heat and let sit until ready to serve.

3. Evenly spread 1 tablespoon of goat or cream cheese on each of the pieces of toast.

Top with the mushroom mixture, then a soft-boiled egg. Serve immediately.

NUTRITION FACTS (PER SERVING) Calories: 242; fat: 14g; saturated fat: 5g; polyunsaturated fat: 2g; monounsaturated fat: 6g; carbohydrates: 19g; sugar: 5g; fiber: 4g; protein: 11g; sodium: 411mg CHEF TIPS For a tasty touch of England, add a tablespoon of Worcestershire sauce to the mushrooms along with the other ingredients. If portobellas are not available, quarter some baby bellas, cremini or button mushrooms. ©2022 Fred Hutchinson Cancer Research Center, a 501(c)(3) nonprofit organization

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Increased endurance

Better control of blood sugar and blood fat levels

Better cognitive function

Improved mood and mental health

Better sleep

Higher energy level

Improved sexual desire and function Along with a balanced diet, getting enough physical activity can help you maintain a healthy weight, and it may help reduce the accumulation of visceral fat within the abdomen (lipodystrophy).

Physical activity also reduces the risk of comorbidities that occur at higher rates in people living with HIV, including cardiovascular disease, diabetes and cancer. Exercise and weight loss can help improve fatty liver disease, which can lead to cirrhosis and liver cancer.

This is an excerpt from the “HIV and Exercise” Basics page on POZ.com.

(WHITE BOARDS) ISTOCK; (EGG TOAST) COURTESY OF COOK FOR YOUR LIFE/LIZA SCHATTENKERK

MUSHROOM & EGG TOAST

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ADAM CASTILLEJO, AKA THE LONDON PATIENT, CONTINUES TO ADVOCATE FOR A WIDELY APPLICABLE HIV CURE.

BY GABRIEL ARANA PHOTOGRAPHY BY JON ATTENBOROUGH

FEW PEOPLE CAN TRULY UNDERSTAND ADAM CASTILLEJO’S journey to being cured of HIV. Timothy Ray Brown was one of them.

“The first time we spoke, he said, ‘Brother, welcome to the family,’” Castillejo recalls. “That was his warm, caring message to me, and it gave me such a sense of acceptance from him.”

Like Castillejo, Brown, initially known as the Berlin Patient, had lived with HIV for years before being diagnosed with blood cancer—Hodgkin lymphoma in Castillejo’s case; acute myeloid leukemia in Brown’s. Both underwent treatment with chemotherapy before undergoing a bone marrow transplant from a donor with a rare genetic mutation known as CCR5-delta32, which blocks HIV from entering T cells. The treatments—Castillejo’s in 2016, Brown’s nearly a decade earlier—cured both men of HIV by replacing their immune

22 POZ JUNE 2022 poz.com

cells with resistant cells carrying the mutation.

At first known only as the London Patient, Castillejo, 41, revealed his identity in a March 2020 article in The New York Times. His medical team had initially advised him to remain anonymous and focus on recuperating. Within a year, as his health improved, Castillejo decided he had a responsibility to the scientific and HIV communities to come forward.

“I want to be an ambassador of hope,” Castillejo says. “I want to represent the future. We have to prepare everyone, mentally and physically, for the journey ahead.”

Castillejo and Brown, who connected after Castillejo revealed his identity, were not able to meet in person because of the COVID-19 pandemic, but they spoke weekly on the

ISTOCK

Adam Castillejo lives in London.

phone and via video chat, sometimes for hours.

“He was able to comfort me on a few things, and I was able to comfort him because for the first time, he could talk to someone he could relate to,” Castillejo says.

“It was a wonderful moment.”

In 2019, Brown discovered that his cancer had returned. In 2020, he announced that he was terminally ill.

“He told me before he was dying, ‘Adam, it’s your turn now,’” Castillejo says. “‘You’re holding the torch of hope. I’m passing it on to you.’”

Brown died in hospice care in September that year.

“I told him I would do the best I can to give hope to people,” Castillejo says.

CASTILLEJO, LIKE HIS DOCTORS, READILY ACKNOWLedges that the treatment he received is not appropriate for most people living with HIV. He counts himself fortunate to be a British citizen because the U.K. government provides health care at no cost. He was able to undergo expensive treatments and work with some of the world’s leading HIV and cancer experts.

“I feel fortunate to have been at the right place at the right time and to have been looked after by the U.K. National Health Service,” he says. “I won the lottery. I never thought in my life that I would be cured of HIV.” What’s more, the risks and side effects of undergoing cancer treatment and a bone marrow transplant make it an impractical course of action for the estimated 38 million people around the globe currently living with HIV. The procedure nearly killed Brown, and he suffered from its aftereffects for the rest of his life.

“It’s important to realize my cure is not accessible to everyone because it is highly risky and costly,” Castillejo says. “At the same time, it’s a blueprint.”

Castillejo’s case shows that curing HIV is possible and augurs a future in which HIV is neither a lifelong condition nor an enduring pandemic. Castillejo believes both society and those living with HIV must prepare for that moment.

“It’s important to prepare the next generation of people for the cure, prepare for the failures along the way, prepare for that crucial moment in your life,” he says. “When you get cured, people look at you in a different way.”

The effects of HIV do not end once you’re cured. The trauma of treatment and the experience of discrimination— close friends walked away after Castillejo shared his HIV status—leave lasting psychological scars. Despite being free of the virus, Castillejo said a part of him relives his desertion by friends whenever he recounts his story. He stresses

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the importance of mental health treatment.

“We need to normalize talking about mental health, which people see as taboo,” Castillejo says.

“People think you are weaker when you talk about mental health, but, in reality, it makes you stronger. As I say to people, ‘It’s OK not to be OK one day and be OK the next day.’”

Paradoxically, Castillejo continues to face stigma on account of his HIV status. “I’ve faced discrimination for having HIV, and now I face discrimination for not having HIV,” he says.

Some HIV/AIDS groups have said they cannot work with Castillejo because their advocacy Despite being cured, Castillejo efforts center on treatment and prevenstill feels like a tion—not an inaccessible cure. member of the “For some in the HIV community, I’m HIV community. not relevant to the cause anymore,” Castillejo says. “People don’t know where to put you now because you’re cured—you’re not part of the group anymore.”

Castillejo sees it differently. “Despite being cured, I will always be a member of the HIV community,” he says.

OF DUTCH AND SPANISH DESCENT, CASTILLEJO WAS raised in Venezuela and moved to Copenhagen as a young man before settling in London in 2002. He discovered he was HIV positive in 2003 at age 23.

“I felt frightened. I felt my life was over. I felt like, as they say, it was a death sentence,” Castillejo recalls.

Castillejo was told he had 10 years to live—20 maximum.

With the support of his partner at the time, he decided to make the best of it. He worked as a chef at a restaurant and took care of himself physically, cycling and running regularly. While close friends and loved ones knew of his status, Castillejo did not speak publicly about his HIV diagnosis at the time.

Castillejo was visiting friends in New York in 2011 when a nurse called him back to London, where he learned he had Stage IV lymphoma.

“I got another death sentence I had to endure,” Castillejo says. But he did not face the same stigma with cancer that he had with HIV. “I was able to talk about it when I found out. I was able to cry. I was able to get support,” Castillejo says. “I always say, ‘With my diagnosis with HIV, I had a lot of hate. With cancer, I had a lot of love.’ We need to change that.”

Nevertheless, years of treatment with chemotherapy and radiation took their toll. Every change in his cancer treatment required an adjustment to his HIV medications. The

cancer was very aggressive, and each successive treatment attempt drained him. Then, in late 2014, just weeks before Christmas, Castillejo disappeared. He reemerged days later with no recollection of what had happened.

“Everything around me was falling apart,” Castillejo says.

“It was too much for me to bear both physically and mentally at the time.” Castillejo considered contacting the Swiss nonprofit Dignitas, which helps those with terminal illness end their lives, but, ultimately, he continued with treatment.

“You have to see yourself at rock bottom and see yourself there in order to get back,” Castillejo says. “Not everyone can do that.” Things looked grim in mid-2015 when Castillejo was told he would not live to see the end of the year. But then, he connected with Ian Gabriel, MBBS, PhD, an expert in bone marrow transplants who had worked with people living with HIV at Chelsea and Westminster Hospital. After failing to harvest Castillejo’s own stem cells for a transplant, Gabriel suggested searching for a bone marrow donor.

Castillejo matched with several, including one in Germany who carried the CCR5-delta32 mutation. Suddenly, Castillejo was presented with an opportunity to be cured of both cancer and HIV. But his medical team urged caution, explaining that he had only a 10% to 40% chance of survival.

“We had controlled expectations,” he says. “The main focus was to cure my cancer.”

Castillejo received a bone marrow transplant on May 13, 2016. What followed was an extended period of recovery during which Castillejo contracted several infections, underwent more surgeries and experienced hearing loss. He lost 70 pounds. Doctors waited 100 days to ensure that his transplant had taken and continued to monitor the levels of HIV and cancer in his blood.

After another six months, they suggested Castillejo stop taking the antiretroviral medication that had kept his HIV in check for more than a decade. Castillejo took his last dose of antiretroviral pills on his birthday in October 2017. Then came more waiting.

“It was not one thing that happened at a single time; it happened over a period of time,” Castillejo explains.

Doctors tested Castillejo for HIV after a week, then again at six months. After a year, the medical team felt confident that Castillejo, like Timothy Ray Brown, had been cured of HIV. But they waited until March 2019—17 months after Castillejo stopped taking antiretrovirals—to announce their findings in the journal Nature and at the Conference on Retroviruses and Opportunistic Infections in Seattle.

Before coming out as the London Patient in March 2020, Castillejo traveled around the world, visiting Australia, South Africa and Peru.

“I wanted to experience things in my life and explore many cultures before my name was made public,” Castillejo says. “After that, my life changed.”

As a public persona and a proud member of the LGBTQ community, Castillejo fields questions via social media, gives interviews to journalists and participates in documentaries.

He lives with his mother.

“When I felt really lost, really hopeless, she was there for me—she’s my rock,” Castillejo says. “She reminded to me to stay focused in life, to see the positive things.”

With the COVID-19 pandemic seemingly coming to an end in many countries—and with effective vaccination against the coronavirus—he says he hopes to be out in public more.

Castillejo says he is driven to speak about his experiences after hearing from so many people who lost family and friends to AIDS in the 1980s and ’90s. “Please find a cure,” the dying told loved ones. “For them, it’s just heartwarming to be able to talk to someone who was cured,” Castillejo says.

He says he regrets not having been able to meet Brown in person but has met the Düsseldorf Patient, a man in Germany who shows no signs of HIV after undergoing a stem cell transplant from a donor with the CCR5-delta32 mutation in 2013.

“We are building a great relationship,” Castillejo says.

“We are similar in many ways, like brothers.”

At the 2022 Conference on Retroviruses and Opportunistic Infections in February, researchers announced that a fourth person—this time, a middle-aged woman of mixed race who was treated in New York City—had been cured of HIV. After contracting the virus in 2013, she was diagnosed with acute myeloid leukemia in 2017. She underwent chemotherapy before receiving a transplant using a combination of umbilical cord stem cells from an infant with the CCR5-delta32 mutation and partially matched adult stem cells from a relative.

As in the other cases, her cancer went into remission and she appears to be free of HIV about a year and a half after stopping antiretrovirals. The outcome is considered especially promising given that a mixed-race person would have a slim chance of finding an adult donor who is both a close genetic match and carries the mutation, which occurs most often in people of Northern European ancestry.

“I welcome the New York Patient,” Castillejo says. “I hope in the future to meet her and say, ‘Welcome, sister, to the family.’”

Castillejo says he plans to continue to spread his message of hope for those living with HIV and to encourage others to live life to the fullest.

“Life is so precious,” Castillejo says. “When they told me I was going to die, I realized the importance of enjoying life the best way you can.” ■

“I WANT TO BE AN AMBASSADOR OF HOPE. I WANT TO REPRESENT THE FUTURE.”

poz.com JUNE 2022 POZ 25

CRYSTAL METHAMPHETAMINE CONTINUES TO ENSNARE GAY MEN, DISTORTING THEIR SEX LIVES AND INCREASING THEIR HIV RISK.

BY MARK S. KING

NINA UY

A

S CHUCK PARKER STOOD OVER HIS ROOMmate’s dead body trying to process what he was seeing, a 911 operator on the phone urged him to perform cardiopulmonary resuscitation (CPR). Parker would have done it, if he had thought there were any chance he might revive his friend, but he knew the time for emergency intervention had long since passed. poz.com JUNE 2022 POZ 27

Mark Wingo, Parker’s roommate of more than 12 years, had been dead for several hours. “I worked in a hospice,” he tells POZ only two days after the horrific episode, “so I have seen someone who has just passed away—they didn’t look like that.”

The remains had lost all color and lay cold and stiff amid the shambles of the bedroom, wedged down between the mattress and the footboard of the bed, as if Wingo had tried to escape something or bury himself.

The 911 operator continued to urge Parker to perform CPR until help arrived. “I started screaming at her,” he recalls, his voice thick with exhaustion and anger. “I yelled, ‘He’s dead, dead, dead, he’s fucking dead!’”

Only the night before, Parker had called paramedics to their apartment. He had been alarmed

by Wingo’s bizarre behavior, including isolating in his room for the previous few days. The emergency medical technicians repeatedly exhorted Wingo to please get in the ambulance and go to the hospital, but he refused. The next morning, he was dead.

Wingo was now yet another statistic of the rising crystal methamphetamine overdose death rate. His death was the climax of years of sporadic meth use and the erratic behavior and broken promises it produces.

Parker shared a post on social media hours after Wingo’s body was taken away. He didn’t skirt around the cause of death, as often happens with drug overdoses. He made it clear that Wingo died of addiction and encouraged anyone who might be struggling to reach out for help.

“I got 20 or 30 hate messages for posting that,” Parker says, as if he had betrayed his friend in some way. “Mark’s family had stepped away from him a while back, but his sister supported my post completely.”

THE RELUCTANCE TO PUBLICLY DISCUSS something that is killing gay men in alarming numbers has a chilling, familiar ring to it. The fact that Wingo, a long-term survivor of HIV, sidestepped one personal health crisis only to be killed by another compounds the tragedy with irony.

“We’re doing a huge disservice when we don’t name addiction,” says sex and addiction therapist David Fawcett, PhD, LCSW, CSAT, “because the problem is escaping our grasp.” Fawcett is based in Wilton Manors, Florida, where meth overdoses among gay men have risen so sharply that the community’s police chief contacted Fawcett for advice.

“Almost every weekend there is another death here, and the cause is never named,” he says. “I understand the needs of families and their right to privacy, but this is an epic battle against the stigma of addiction and addiction

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itself. Privacy is, to an extent, at odds with that.”

According to a recent study by the National Institute on Drug Abuse, overdose deaths involving crystal meth nearly tripled from 2015 to 2019. The study also suggests that, while use of meth continues to rise, “higher risk patterns” of use, such as injection drug use or using more frequently, are climbing and contributing to higher overdose numbers.

In other words, more people are using meth and using it more intensely, and a lot more of them are dying as a result.

Fawcett warns that the chemical makeup of meth (also known as “crystal” and “tina”) has changed drastically since large cartels began manufacturing the drug. “Overdose deaths are not coming from meth itself,” says Fawcett, “but the fentanyl that is often on board, either because the meth is made with fentanyl in it, or because people are going to stronger opioids that include fentanyl to come down from the meth.”

(FAWCETT AND RANDLE) ROBB KELLY; (ROSE) MARK S. KING; (WINGO/PARKER) COURTESY OF CHUCK PARKER

Left page: David Fawcett, PhD, LCSW, CSAT; right page, clockwise from top: Doug Rose; Breaun Randle; and the late Mark Wingo (baseball cap) and Chuck Parker (foreground)

ALTHOUGH METH USE HAS GROWN ACROSS every demographic group, the drug still has a very particular cultural grip on gay men. The National Survey on Drug Use and Health found that meth use was more than four times higher among gay men compared with straight men. For many younger gay men, meth use is sometimes part of the coming out process itself.

“The only real exposure to the gay world I had was with meth,” says Breaun Randle, a 25-year-old gay man who began using meth when he started to explore his sexuality after high school. “The first gay friend I hung out with was a meth user, and then I branched out and found more users. It just seemed to be what people did.”

Teenagers coming of age don’t inherently know about

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HIV risks either. “I didn’t know much about HIV at all,” Randle admits. “I thought a sexually transmitted infection was something you just got treated. No one talked about their HIV status on the apps I was using.

It was never really a big concern of mine.”

As meth became more central to Randle’s everyday life, he sought out experiences that could pierce the numbness of being high, increasing his risk.

“Nothing was exciting anymore,” he says. “I’d done it all. I was desensitized to the stimuli.”

“E x per i ment i ng with drugs is normal human behavior,” counsels Fawcett, “but this drug can pull people into darker corners of our world.”

It is common for gay men using crystal meth to push their own boundaries of risk, even far beyond their authentic sexuality. “People on meth can end up in scary places, doing things that wouldn’t ordinarily happen.

The thrill becomes primary.

“Meth is not inherently a sexual drug,” Fawcett adds, noting its migration between very disparate groups, from Nazis to bikers to straight folks in Appalachia to urban gay men. “A lot of people use it for weight loss or increased energy,” says Fawcett. “It’s gay men who really took a feature of meth—the increased sexual appetite—and linked it to this sexual party aspect of it.

We have an arousal template, and meth hijacks it. People have gotten into an extreme sexual template, such as satanic fantasies or transmitting HIV. These are fantasies that their sober minds would not conjure.”

When Randle entered a drug rehabilitation facility at 22 years old, he tested HIV positive. “I have no idea when I got it or from whom,” he says. “As time went on, I needed more to excite me sexually. I guess I expected to get HIV.”

“Meth is not just a quick, fun party drug,” warns Fawcett. “It’s a devastating and toxic drug that really does a lot of long-term damage to people emotionally.” Fawcett wrote about the fusion of meth and sex in his influential 2015 book, Lust, Men and Meth: A Gay Man’s Guide to Sex and Recovery.

“Meth is also an amazingly potent emotional painkiller,” Fawcett adds. “There’s a lot of emotional stress and pain out there, and this drug allows people to drop out of their lives and just not feel.

That’s what keeps people coming back despite the wreckage it can cause.”

DOUG ROSE KNOWS something about the pain and isolation of being a long-term survivor and the escape that meth can provide.

“From the time I was diagnosed with HIV in 1990,” Rose recalls, “I had feelings of worthlessness and undesirability. I found that if I used drugs like meth, all those thoughts went away. I felt viable again.”

Rose was nearly lost to AIDS after prolonged meth use; he eventually stopped using drugs and alcohol in 2008. Sobriety helped repair him physically, but much of his loneliness remained.

“I don’t have the looks I used to have,” Rose says about his prospects today. “Finding a partner is hard. People will tell me, ‘Oh, but you’re such a great guy, you should be able to fi nd someone,’ and I respond, ‘So do you want to date me?’ and they say, ‘Oh, no, I didn’t mean me!’”

“It has been hard trying to be intimate with someone else over so many years,” he says. “What do I have to do? Do I have to go to the right meetings, the right civic groups, the right gym? None of that has worked for me.

“There has been no quick solution,” Rose says with

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NINA UY

“THIS DRUG CAN PULL PEOPLE INTO DARKER CORNERS OF OUR WORLD. PEOPLE ON METH CAN END UP IN SCARY PLACES.”

resignation, “except for meth.”

“I find other comforts today,” he says. “I was discomforted A few months ago, Rose felt particularly vulnerable, and for a long time, and I don’t have to live like that anymore. I’m his addictive thinking took over. “I had sex on my mind, and on HIV treatment and am undetectable. It’s a huge responsiI knew what hookup apps to use to get it. I didn’t even think. bility to take care of myself.”

I just ran into a blind spot.”

Randle also relates differently to other gay men. “My Within hours, Rose was using meth again after having friendships are more intimate,” he says. “I have great friends abstained for almost 14 years. “It wasn’t premeditated,” he who are loving and supportive, and I want to be that kind of says. “I just wasn’t able to pursue sex without pursuing person too.” crystal meth.”

“This is a new way of life for me,” Randle adds gratefully.

Over the course of the next 10 days, the drug failed to “I didn’t think people lived this way.” produce the sexual thrills Rose had in mind.

Parker still deals with the emotional fallout of his former “The sex was not great,” he says. “And there were conseroommate Wingo’s overdose. “I’m angry,” he admits. “I feel quences. In the 10 days I was using meth, my ID and credit like it was a very selfish thing for Mark to do. And I feel cards were stolen, I spent money I did not have and I got guilty because I feel relieved, because it’s been a lot of work.

COVID. The meth did not solve the sex problem or my need I went through a lot to support him.” for intimacy. It just didn’t.”

When Wingo was suffering during a serious cancer scare The dangers of meth use are dramatically higher for older a few years ago, he said something disturbing that Parker people and for people living with HIV. hasn’t been able to shake. “Mark said to me, ‘I just want to “With meth, you are flooring the gas pedal on your feel good enough to do meth one more time,’” Parker confides. body and holding it there for four or fi ve days,” Fawcett “Can somebody explain that to me, please? I don’t know explains. “You have dopamine and adrenaline and all how to process that remark.” these stress hormones activated, which is extremely taxing There is a lot that Parker wants to understand, like the on your body and your heart. So we see people having baffl ing nature of meth addiction and its grip on his fellow heart attacks and strokes.” gay men and why nobody is talking about all the dead bodies.

HIV medications and meth can be a particularly dangerMost of all, though, Parker wishes that Wingo had agreed ous mix. So-called booster medications like ritonavir and to get into the ambulance on that terrible night. ■ cobicistat, which are components of several HIV treatment regimens, work by slowing down the metabolism of some Mark S. King is a long-term HIV survivor and is recovering from antiretrovirals so that the HIV meds remain at higher levels crystal meth addiction. He wrote the foreword to David Fawcett’s in the body.

2015 book, Lust, Men and Meth.

“Boosters will increase the blood levels of meth in your body too, so your body doesn’t clear meth at the rate it would ordinarily,” GETTING HELP FOR METH ADDICTION Fawcett warns. “That becomes very dangerous.”

If you are concerned about your use of meth or other drugs: SINCE ROSE’S RELAPSE, he has returned to his recovery program, but life without drugs doesn’t offer easy answers. “I know that when my life is driven by purpose, I’m much happier,” he says. “For many years, that purpose was in the rooms of recovery. And I spent years doing HIV activism, and I felt valued and admired.” While he might not have a romantic partner in his life right now, Rose’s relapse has reminded him that meth will only worsen his situation.

For his part, Randle continues to participate in a recovery program and has a sunny outlook.

Learn more. Read about the signs of addiction and answer a selfassessment questionnaire.

Speak up. Talk to someone you trust for support and advice.

Call. Crystal Meth Anonymous offers peer support via 855-METH-FREE. The Substance Abuse and Mental Health Services Administration helpline at 800-662-HELP offers support and referrals for individuals and families facing drug and mental health issues.

Show up. Crystal Meth Anonymous (CrystalMeth.org) and Narcotics Anonymous (NA.org) host in-person and virtual 12-step meetings. Try SMART Recovery programs (SMARTRecovery.org).

Consider inpatient treatment. Use a nonaffiliated facility locator such as FindTreatment.gov.

Explore harm reduction. The social justice movement embraces a set of practical strategies to reduce the negative consequences of drug use (HarmReduction.org).

poz.com JUNE 2022 POZ 31

HEROES

BY CHARLES SANCHEZ

Hunter Reynolds cofounded ART+ Positive.

32 POZ JUNE 2022 poz.com

Hunter Reynolds, a deeply gifted and prolific artist and activist, has been documenting his journey as a gay man living through the AIDS epidemic since he was diagnosed with HIV in the initial days of the crisis. An early member of ACT UP and a cofounder of ART+ Positive, an ACT UP affinity group that battles homophobia and censorship in the arts, Reynolds, 63, has expressed his experiences to the world via photography, video, performance and installation.

For his alter ego, Patina du Prey, Reynolds’s creative articulation erupts in the designing and donning of sculptural gowns, including the epic Memorial Dress (1994), a black strapless ball gown with a hoopskirt that bears the names of 25,000 people who died of causes related to HIV. His work is profound, beautiful, at times startling and always ferociously honest.

Living amid the creative chaos of a Brooklyn artist’s apartment, Reynolds has been waging a war with another health challenge for nearly seven years: an aggressive skin cancer made more severe by his HIV. The dermatologist who diagnosed him grimly stated, “This will be what kills you.”

“It started with just superficial stuff, just like on the surface,” Reynolds says. But then it spread. “I had to replace my entire nose. That was like three years ago. Then a year and a half ago, they removed my right eye.” The doctors also removed his teeth. “They said, ‘We have to pull out all your teeth before the radiation because radiation to the face can cause bacterial infection, which can derail the entire radiation process,’” he says.

He now has several caretakers who wade in and out of his apartment as he powers through the challenges and fears that accompany this solemn diagnosis. Some days he feels good, and some days the pain and trauma of illness overwhelm him and keep him immobile.

“I’m on a steroid that really helps,” he says.

“It’s allowed me to get my appetite back and work, get up and feel good during the day. But there are these breakout days when it’s just crazy pain.”

Despite all these challenges, Reynolds is still making art. “I’m finishing this mega epic piece.

It’s going to be huge,” he says. “I’m working on my self-portrait. I’m working with people; I’m collaborating. I’m at the point where I’m feeling good and just trying to get the work done.

“Anyone going through this sort of thing, you just have to find the strength in yourself to have hope. Ray Navarro was a video activist, and he died at 26 years old. He was one of my best friends. He changed my life on his deathbed. He opened up like a flower to his death, and he used everyone around him to help him create everything he wanted before he died,” Reynolds says. “So you know how you do it? You do it.

When I want to wither away, I just open up and do what I can do.” ■

BILL WADMAN

An Artful Life

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