A SMART+STRONG PUBLICATION JULY/AUGUST 2022 POZ.COM $3.99
H E A L T H ,
L I F E
&
H I V
Viral Journey
Searching for an HIV cure
Tom Perrault
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.
BIKTARVY, the BIKTARVY Logo, GILEAD, the GILEAD Logo, GSI, and KEEP BEING YOU are trademarks of Gilead Sciences, Inc., or its related companies. Version date: February 2021 © 2022 Gilead Sciences, Inc. All rights reserved. US-BVYC-0008 01/22
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#1 PRESCRIBED
HIV TREATMENT * *Source: IQVIA NPA Weekly, 04/19/2019 through 05/28/2021.
CHAD LIVING WITH HIV SINCE 2018 REAL BIKTARVY PATIENT
KEEP BEING YOU. Because HIV doesn’t change who you are.
BIKTARVY® is a complete, 1-pill, once-a-day prescription medicine used to treat HIV-1 in certain adults. BIKTARVY does not cure HIV-1 or AIDS.
Ask your healthcare provider if BIKTARVY is right for you. ONE SMALL PILL, ONCE A DAY Pill shown not actual size (15 mm x 8 mm) | Featured patient compensated by Gilead.
Please see Important Facts about BIKTARVY, including important warnings, on the previous page and visit BIKTARVY.com.
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CONTENTS
EXCLUSIVELY ON
POZ.COM #ADVOCACY Fighting against HIV and AIDS has always been a struggle. Much work remains to end the epidemic. POZ encourages you to get involved in advocacy. Go to poz.com/ advocacy to find the latest news and learn how you can make a difference in the fight.
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Tom Perrault was board chair of the San Francisco AIDS Foundation.
#CRIMINALIZATION
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#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.
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POZ DIGITAL Scan the QR code (left) with your smartphone camera or go to poz.com/digital to view the current and past issues online.
22 MY HIV CURE TRIAL In this essay, Tom Perrault recounts his journey toward hopefully controlling HIV without medication. BY TOM PERRAULT 28 THE LONG & WINDING ROAD Long-acting antiretrovirals and long-term remission are the next frontiers in HIV treatment. BY LIZ HIGHLEYMAN 32 A CHANGE IS COMING TO SCOTT COUNTY People living with HIV are meeting the accelerating challenges of the opioid epidemic. BY HEATHER BOERNER 3 FROM THE EDITOR I Still Haven’t Found What I’m Looking For
4 POZ Q & A José M. Zuniga, who leads the International Association of Providers of AIDS Care, urges further action on global HIV advocacy.
6 POZ PLANET
Retire the word “risk” • cultural influencers promote HIV prevention • Danny Roberts from The Real World: New Orleans • HIV aid to Ukraine • vaccine scientists reach out to people of faith • Everyday
14 CARE & TREATMENT
Does low T matter? • move better after leg exercises • speak up for menopause care • the White House unveils a communityinformed drug policy
16 RESEARCH NOTES
PrEP barriers persist • FDA OKs Cabenuva, an every-other-month injectable, for teens • broadly neutralizing antibodies can lead to remission • lung cancer screening
19 BASICS Clinical trials
11 VOICES
20 NUTRITION & FITNESS
In “Not Alone,” POZ blogger Richard JMV shares another milestone in their life with HIV and comes out as nonbinary, and in “Hugs OK,” NMAC executive director Paul Kawata writes about how good it felt to be back at the 2022 Biomedical HIV Prevention Summit—in person.
Artichoke, arugula and olive pizza • what kind of exercise is best?
36 HEROES While still searching for a cure, Steven Deeks, MD, applies his HIV expertise to a new challenge: long COVID.
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. 261 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: (PERRAULT) ANGELA DECENZO; (GAVEL/BOOKS, BARBED WIRE AND MAGNIFYING GLASS) ISTOCK
Opinions still vary on whether criminal law should apply to HIV disclosure, exposure and transmission. However, there is a growing consensus to make laws reflect current science. Go to poz.com/ criminalization for more on how you can get involved in reform efforts.
FROM THE EDITOR
I Still Haven’t Found What I’m Looking For
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I
HAVE ALWAYS BELIEVED THAT HIV would someday be cured. I just never thought it would take this long. My belief that science can achieve what it sets out to do if given the time and resources has been tested. That said, I have more hope than ever for an HIV cure that will end the epidemic. Much of that excitement comes from the fact that we’ve already seen a cure. The late Timothy Ray Brown, aka the Berlin Patient, was the first confirmed case. He fought leukemia with a bone marrow transplant that also happened to have a genetic mutation that prevented HIV from entering cells. He died of a recurrence of his cancer, but he remained free of HIV. POZ recently spotlighted the second person confirmed to be cured, Adam Castillejo, aka the London Patient. He was cured of HIV by the same procedure. But as Adam knows all too well, his example, while inspiring, will benefit only a few. The costs and the risks make it impractical for most of us. That’s precisely why he is advocating for a widely applicable cure. There are a few more people who may be cured of HIV, and in time, others from ongoing studies will probably be considered cured. The path to the magic bullet is still unknown. In fact, there may be not one but many paths. There is real hope. Case in point: Tom Perrault. Our cover subject was board chair of the San Francisco AIDS Foundation. He went on treatment immediately after testing HIV positive in 2004, although at that time the benefits of starting treatment at diagnosis were still being debated. Today, it is standard procedure. Tom’s decision in 2004 is part of what made him eligible for the most complex cure trial to date. The goal of the trial is to stimulate the immune system of people living with HIV so that they can control the virus without medication, what’s often referred to as a
functional cure. HIV still resides in your body, but it doesn’t harm you and you can’t transmit the virus. I would take that if I could. Go to page 22 to find out more about Tom’s story. One of the most prominent cure researchers is Steven Deeks, MD, the principal investigator of the cure study that Tom is in. The trial is a joint collaboration between amfAR, The Foundation for AIDS Research, and the University of California San Francisco, where Steven has spent 30 years studying HIV. Go to page 36 to read about his new challenge. Until there’s a widely applicable cure, we must continue the search for better HIV treatment and prevention. This special issue of POZ highlights the latest in the science behind those efforts. Go to page 28 to read about long-acting antiretrovirals and long-term remission. One of the recent barriers to making progress in the HIV epidemic has been COVID-19. José M. Zuniga, PhD, MPH, believes we need to refocus. Go to page 4 to read our Q&A with the president and CEO of the International Association of Providers of AIDS Care.
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 JULY/AUGUST 2022 POZ 3
POZ Q & A
MILES TO GO
The International Association of Providers of AIDS Care urges further action on global HIV advocacy.
J
OSÉ M. ZUNIGA, P h D, MPH, IS PRESIDENT AND CEO OF THE International Association of Providers of AIDS Care (IAPAC), which represents more than 30,000 clinicians and allied health care professionals worldwide. IAPAC also serves as the secretariat for the Fast-Track Cities Institute, which supports a network of more than 390 cities striving to end their HIV epidemics by 2030. As two United Nations (U.N.) public health deadlines loom—attaining ambitious HIV programmatic targets by 2025 and ending AIDS as a public health threat by 2030—Zuniga reflects on successes, shares his concerns and explains why he remains optimistic about the global HIV response.
Are we on track to meet the U.N.’s HIV goals and targets?
We are not on track, even if we use the most lenient of metrics. That is not to say that zero progress has been made. After all, HIV was transformed from an automatic death sentence to a chronic condition for the 28.2 million people living with HIV who are on antiretroviral therapy (ART) today. Still, 6.1 million people living with HIV do not know their status, and of those who know their status, almost 30% are not on ART, whose successful outcome is Undetectable Equals Untransmittable, or U=U. The COVID-19 pandemic sent us even further off track. What has gone wrong, and what have we gotten right?
We took our eye off the ball. Some among us became complacent, seemingly content with the progress achieved pre–COVID-19 and/or the unproven belief that our losses from the colliding epidemics of HIV and COVID-19 were not as bad as initially feared. There is also a willingness to take up other, albeit important, issues while our own
4 POZ JULY/AUGUST 2022 poz.com
messages, as those focused on advancing the HIV response, should be primarily focused on HIV. For example, spending two years fixated almost entirely on COVID-19 while HIV continues to rage among key populations has been counterproductive in our efforts to curb complacency, urge engagement and make the case for continued investment. There is a laundry list of other gaps we have failed to address, including the slow pace of implementation of HIV medical and prevention interventions we witnessed before and hope to avoid with the rollout of long-acting antiretrovirals. Learning lessons from what has gone wrong is as important as learning and replicating what is successful. We need to have those conversations—not in isolation of those who are most affected but instead led by them. People living with and at risk for HIV must have a prominent role in leading the discussion about how to get back on track. The list of what we have gotten right is a long one. The HIV community pioneered advocacy to address an epidemic
ISTOCK
BY JIENNA FOSTER
that exploded into a pandemic and claimed the lives of millions of people in the process. As that tragedy unfolded, an HIV movement took form, took action and took responsibility for ensuring that the trajectory from an HIV diagnosis turned from that of an early grave toward the possibility of living a long life. This success was predicated on community engagement, political will, sound public policy and health financing. The leadership of affected communities propelled the HIV movement further than it might have gone if the response was left only to governments. Affected communities are still on the front lines of advocating, delivering and monitoring HIV services. That is as it should be, and we must ensure that key populations, including LGBTQ people and migrants, are lifted up and their supportive health and social support organizations adequately resourced to combat inequities and stigma. Leadership from those most affected by HIV is critical, not just because they are best suited to lead us but also as a moral imperative.
(ZUNIGA) COURTESY OF IAPAC
What keeps you up at night as you think about the global HIV response?
It is the fact that with the tools at our disposal and the know-how to guarantee people living with HIV a near normal life span, we continue to witness an unacceptable number of AIDS-related deaths annually—680,000 in 2020. I regret, too, that while the pediatric HIV epidemic has enjoyed a significant amount of lip service, the response itself has lagged due to a lack of resources. I also fear that without a more robust engagement to shatter the status quo, people living with or affected by HIV will continue to be unjustly targeted by arcane and inhumane laws, condemning some to languish in prisons for reasons that are based on ideology rather than science. My heart sinks when I hear about a diminution in political and financial commitment to maintain a comprehensive and robust HIV response that will get us across the finish line. I worry about inequities built into our public health system and the lack of planning
for implementing innovations in an equitable manner. Finally, human-made crises, such as what we are witnessing with the unprovoked war on Ukraine, anger me because, ultimately, in perpetrating these acts of military aggression, the human rights to life, dignity, health and self-realization are violated. Assuming it is not too late, what can we do to get back on track?
We need to refocus. We can and must address the persistent barriers that thwart our ability to regain momentum against HIV and, just as important, deny people the opportunity to live healthy lives in a more equal society. However, in many instances, institutions are much better positioned to
José Zuniga
only way to regain momentum for the HIV movement, but these approaches will only work if we place affected communities in the driver’s seat. Relatedly, human rights must be at the center of the HIV response, since ultimately a virus is not the singular cause of so much indignity and suffering endured over so many decades. Ours is a monumental task to advance an agenda of social transformation, the goals of which are aligned with the HIV response but are also advanced through strategic alliances with the equality, food security, poverty, women’s rights and other movements. All of this is doable, but we must have the humility to acknowledge our current predicament and the courage of our convictions to get back on track.
“Leadership from those most affected by HIV is critical.”
advocate for social enablers. Similarly, we need to better integrate syndemics into our work, including mental health conditions, which have become more acute coming out of the COVID-19 pandemic. Obv iously, we require sound public policy to guide our efforts and adequate financial resources to fuel the HIV response. Reimagining HIV prevention is urgently needed, particularly to stem the tide of new HI V infections, which stands at 1.5 million annually. Also urgent is eliminating business-as-usual approaches that have failed to deliver for affected communities. Moreover, too often our interventions are driven by politics rather than science—for example, with respect to needle exchanges and supervised injection sites for people who inject drugs. Data-driven, equit y-based, ev idence-informed approaches are the
Are you hopeful about the future?
I am an eternal optimist, largely because I see the dedicated advocates, clinicians, researchers, service providers, political and public health leaders and others who are making progress despite the evolving challenges we have faced. I am convinced that we can recommit to adequate investment for a renewed and reenergized global HIV response. But my optimism is tempered by the reality of the world in which we live. In that respect, I also hope that we can redefine that reality so that no one is left behind as we work to curb new HIV cases and AIDS-related deaths but also to ensure that people living with and affected by HIV are treated with the dignity they deserve and to which they have a human right. ■
Jienna Foster is IAPAC’s senior director of communications.
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POZ PLANET BY TRENT STRAUBE
Retire the Word “Risk” In ViiV’s new initiative, Black women offer stigma-free language. “Women at risk for HIV.” “On the down low.” “Risky behavior.” “High-risk sex.” Such phrases frame conversations about HIV prevention in terms of stigma, fear and judgment, according to Risk to Reasons, a new initiative from ViiV Healthcare spearheaded by and targeting African-American women. The initiative is the result of the Black Women’s Working Group to Reframe Risk, a collection of advocates, researchers, communications experts and Black women living with and working in HIV. Established by ViiV, the group convened several times and
POZ POLL:
Do you think phrases like “highrisk behavior” are stigmatizing?
47% 42% 11%
Yes No I don’t know
Women published its findings in featured in “From Risk to Reasons: A Risk to Guide for Communicating Reasons and Connecting with Black Women about HIV,” which you can read for free online. The $5 million initiative also funds community action and connects advocates across the nation. Black women account for 55% of new HIV diagnoses among cisgender women and 46% of new diagnoses among transgender women, despite making up less than 15% of the female population. However, the report points out, only about 10% of women who could benefit from pre-exposure prophylaxis (PrEP, the pills and injections that prevent HIV) are prescribed it. Clearly, new approaches are needed to reach and empower Black women with regard to HIV prevention and care. “When it comes to HIV, the very language designed to raise women’s awareness and motivate them to practice prevention—‘risk’—is often counterproductive and off-putting,” write the report’s authors. “The word ‘risk’ is unspecific and stigmatizing. It
can cause people to disassociate, rather than reflect on their potential prevention needs.… For Black women, the greatest ‘risk’ for HIV may be poverty, homelessness, where you live, intimate partner violence or other social determinant.” The Risk to Reasons initiative calls for new approaches and new language. Instead of saying “women at risk for HIV,” try “women with reasons for HIV prevention.” And it suggests centering discussions on personal choices, respect and the inherent empowerment found in HIV prevention and care.
Seeing One Another Without Judgment “We all have a role to play and a responsibility when it comes to HIV prevention,” says fashion designer and businesswoman Tina KnowlesLawson (aka Beyoncé’s mom). She speaks from experience, having lost a best friend to AIDS early in the epidemic. Her insight is part of the new public service announcement (PSA) campaign “Me in You, You in Me,” which aims to destigmatize HIV discussions and spotlight HIV prevention and treatment as an individual act and a community effort. Produced by ViiV Healthcare, the PSAs pair cultural influencers who have never met to discuss how they’d like to be loved and viewed without preconceived judgments. Then they’re filmed Jalen Rose with Tina seeing each other for the first time. KnowlesKnowlesLawson, for example, met NBA player–turned– Lawson; sports analyst Jalen Rose. Watch the campaign Reno Gold online and at HIVPreventionforUs.com. The campaign represents the populations— such as Black women, gay men and sex workers—most affected by HIV but often less likely to know about or access
6 POZ JULY/AUGUST 2022 poz.com
prevention, such as PrEP (pre-exposure prophylaxis in the form of pills and injections) and U=U (Undetectable Equals Untransmittable, the fact that people with HIV don’t transmit it if they take meds and their virus is suppressed). Reno Gold—an adult film star and PSA participant—tells POZ that the campaign’s message of breaking down boundaries and stigma resonated. “Since I’m one of the most Google-searched porn stars, I wanted to make a positive impact and share how important HIV prevention is,” he says, adding, “my industry is diligent in its effort to stop the spread. Everyone’s on PrEP or antiretrovirals and getting tested often.” Gold made headlines in 2020 when he donated one week of his OnlyFans earnings—$27,202.32!—to the Elton John AIDS Foundation. “The message in [“Me in You, You in Me”] is important for all people, gay or straight, to hear,” Gold says of his latest advocacy effort. “We all have a part to play in HIV prevention.”
(RISK TO REASONS) COURTESY OF VIIV HEALTHCARE; (ROSE AND KNOWLES-LAWSON) COURTESY OF VIIV HEALTHCARE; (GOLD) INSTAGRAM/@RENO_GOLD
Cultural influencers promote HIV prevention.
HIV in The Real World
(THE REAL WORLD: NEW ORLEANS) COURTESY OF MTV; (ROBERTS) COURTESY OF GLAAD; (RIBBON) ISTOCK; (UKRAINE) COURTESY OF UNAIDS/100 %LIFE/VOLODYMYR BIRULIA
Danny Roberts returns in New Orleans Homecoming and battles HIV stigma. In the summer of 2000, Danny Roberts became a breakout star in MTV’s reality show The Real World: New Orleans. With cameras rolling, the newly out heartthrob championed LGBTQ equality as he dated an Army captain whose identity couldn’t be revealed because of the military’s “Don’t Ask, Don’t Tell” policy. Fast-forward 22 years. That discriminatory policy has ended, same-sex marriage is legal and Roberts has joined his castmates for The Real World Homecoming: New Orleans (on Paramount+). And From top: the 2000 one more thing: Roberts, now 44, has been living cast of MTV’s The with HIV for over a decade. Real World: New “It was really challenging to realize how much of Orleans; Danny the world, including gay men, still have enormous Roberts today amounts of negative bias toward anyone who is positive,” Roberts told GLAAD’s Anthony Ramos in a POZ feature. “It still comes loaded with all sorts of judgment and preconceived notions. And I just thought, Well, here’s the next chapter of my life where the universe has presented a challenge to me that I want to own and be vocal about so that hopefully other people live in a little less pain.” Although he has been living in Manhattan and Vermont, working as a tech recruiter and helping raise his 6-year-old daughter with his ex-husband, Roberts is originally from Georgia. The South experiences a disproportionate burden of HIV. For example, the nine states in the Deep South comprised 29% of the U.S. population in 2019 but accounted for nearly 44% of all new HIV diagnoses that year, with Black, Latino and LGBTQ people disproportionately affected. That means the Deep South has the highest rate of new HIV cases; the region also experiences the highest rate of HIVrelated deaths. Sounds like the perfect time for Roberts and the reality TV spotlight to return to New Orleans and normalize discussions about HIV.
Getting HIV Aid to Ukraine Global groups unite to deliver meds. Before war broke out in Ukraine, of the estimated 260,000 people living with HIV in the country, about 152,000 were taking medication to suppress the virus. Not long after Russia invaded on February 21, nearly half the pharmacies were shuttered. That’s a long time to go without refilling a prescription. As the HIV crisis continues to escalate amid Unpacking supplies at the large-scale humani100% LIFE tarian catastrophe, in Ukraine global AIDS groups and drugmakers have pitched in to supply meds. In March and April, the U.S. President’s Emergency Plan for AIDS Relief (PEPFAR) “invested a total of $13 million in emergency funding to procure 51 million doses of antiretroviral medications (ARVs), enough to meet the urgent treatment needs of Ukrainians living with HIV for up to a year,” reported the Department of State. The Joint United Nations Programme on HIV/AIDS (UNAIDS) also led efforts to provide HIV meds—and harm reduction services, such as opioid substitution therapy—to Ukrainians (for example, through the HIV network 100% Liife) and to refugees in Poland, the Czech Republic and other European Union countries. Joining UNAIDS and PEPFAR are the World Health Organization, UNICEF, the United States Agency for International Development and The Global Fund to Fight AIDS, Tuberculosis and Malaria. Anyone in Ukraine who is seeking ARVs can call 0800-500-451 or visit HelpMe.com.ua/ua/main.
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POZ PLANET BY TRENT STRAUBE
Faith & Vaccines The HIV Vaccine Trials Network (HVTN) Faith Initiative launched on World AIDS Day 2021 to expand on the success of an earlier program headed by science leaders and faith ambassadors that countered COVID-19 misinformation and encouraged COVID vaccinations. In honor of National Faith HIV/AIDS Day, observed the last Sunday in August, POZ spoke with Ulysses Burley III, MD, MPH, the national initiative’s project director. Which religious communities do you work with? The faith ambassadors represent Christianity, Islam, Buddhism and the Baha’i faith. However, our faith networks also reach Jewish, Hindu, Sikh and Indigenous faith communities. Do you enroll folks in trials? The HVTN Faith Initiative isn’t directly involved in HIV vaccine trials. Our mandate is to [offer] culturally competent, socially relevant and theologically sound information, education and capacity building training from trusted community voices in science and faith. If our outreach compels people of faith to volunteer for an HIV vaccine trial, we work with our HVTN colleagues to connect them with one of the four Phase I HIV vaccine trials currently
recruiting adults across about 41 sites in the United States. The HVTN Ulysses has recently launched the “Help End HIV” Burley III, campaign (HelpEndHIV.org), which features MD, MPH a national Red Ribbon Registry designed to educate and match people who are interested in supporting HIV vaccine research with HIV clinical trials. Why include faith communities in this research? Faith—much like scientific research—is rooted in the desire for abundant life for all, with healing as a key tenet in every sacred text. Faith leaders continue to be trusted messengers, particularly in BIPOC [Black, Indigenous and people of color] communities hesitant to participate in research studies due to a legacy of medical abuse and present-day trauma. Science is only as useful as the people who are willing to use it. With 37 million people living with HIV [worldwide] and 40,000 new annual HIV diagnoses in the U.S. alone, even a marginally effective HIV vaccine would save millions of lives. The active pursuit of an effective HIV vaccine that can bring wellness and wholeness to the world is not just theoretical but theological as well.
EVERYDAY July
August
These dates represent milestones in the HIV epidemic. Visit poz.com/aidsiseveryday to learn more about the history of HIV/AIDS. BY JENNIFER MORTON
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TIMOTHY DUWHITE, a writer, performer and poet living with HIV, premieres his performance piece Neptune at Dixon Place in New York City. (2018)
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The Incredible Hulk loses his friend JIM WILSON to an AIDS-related illness in issue No. 420, “Lest Darkness Come.” The Marvel comic tackles HIV stigma and homophobia. (2004)
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The Department of Health and Human Services and the Centers for Disease Control and Prevention launch the national HIV awareness campaign “LET’S STOP HIV TOGETHER,” which aims to combat the stigma and complacency fueling the HIV epidemic in the United States. The campaign includes two POZ editors, Regan Hofmann and Oriol R. Gutierrez Jr. (2012)
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Rapper NICKI MINAJ and pop star RICKY MARTIN are announced as the latest spokespeople for the MAC AIDS Fund’s Viva Glam campaign. Proceeds from the sale of the Viva Glam lipstick go toward fighting HIV and AIDS. (2011)
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SEAN SASSER, an AIDS educator and reality television personality known for his relationship with fellow AIDS activist Pedro Zamora of MTV’s The RealWorld: San Francisco, dies of mesothelioma, a rare lung cancer. (2013)
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SOUTHERN HIV/AIDS AWARENESS DAY
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FAITH HIV/AIDS AWARENESS DAY
(BURLEY) COURTESY OF ULYSSES BURLEY III, MD/ KORY FONTENOT; (DUWHITE) TIMOTHYDUWHITE.COM; (HULK) MARVEL.COM; (VIVA GLAM) MACCOSMETICS.COM/VIVAGLAM
Researchers reach out to faith communities.
VOICES BLOGS AND OPINIONS FROM POZ.COM
NOT ALONE In a blog post titled “Coming Out Again, but This Time as Nonbinary,” POZ blogger Richard JMV shares yet another milestone in their journey living with HIV. Below is an edited excerpt.
(HANDS) ISTOCK; (JMV) COURTESY OF RICHARD JMV
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AVING A BLOG HAS BEEN quite a healing and refreshing outlet in my life. Since I first posted in March 2018, I have shared my journey of getting sober, focusing on my entertainment and nightlife career, dating, and learning to thrive with HIV. But over the past year, I’ve posted much less. I found myself distracted, lazy, confused and unsure about the next step for my life. It seemed the world was opening up after COVID-19 and then shutting down again after the emergence of another variant. It has put a mental strain on all of us. I wasn’t sure what I should write about because my life and career seemed to be fluctuating, but then I realized there is an entirely new chapter to my story that I want to share. During lockdown, I discovered that there was something about being a cisgender gay man that always felt like a cover for my true identity as Richard a nonbinary JMV person. The more I heard discussions from others who are nonbinary and trans, the more I sat and
thought about my gender identity. It was an epiphany, to say the least. It was also as if I’d thrown a brick into my life and shattered everything I learned. There were over 30 years of what I knew as a gay man that I had to reflect on. Taking time to process my thoughts was critical to get to where I am now. I feel more comfortable using they/them pronouns and speaking up. Some of my first thoughts were scary. Will people accept me? Will I accept myself? Will people still find me attractive? Will people adjust to me and respect me? How will I respond when faced with ignorance? It feels a little like going to a new school or starting a new job—I just have to show up as myself, knowing that not everyone will get it at first, but they’ll learn to respect me. I started this blog to tell my story up until about 2018. My last blog entry, from October 2021, “How I Turned Halloween Into My Own Season of HIV Awareness,” was about how I was getting ready to tell my story publicly in the fall of 2017, which led to my blog on POZ.com. That period was a turning point in my development, growth and acceptance of my own status. Throughout the process of writing my story, I heard from many people. Several wrote comments or slid into
my direct messages on Instagram or Facebook. It was kind of cool to think that I was creating this safe space for people to reach out and tell me their stories. When my followers would approach me in real life, it would usually get emotional. It still happens and reminds me that telling our stories isn’t about us but about how others can relate. Telling our stories authentically makes us feel both vulnerable and powerful, and it creates community and a sense of belonging—I’m not alone. Now, I’m ready to tell you about the next part of my life while occasionally sharing stories and thoughts from the past. This road has been quite emotional, quite tricky and dramatic, but it has also allowed me room to change. It has been an opportunity to look at myself and learn to grow beyond my ego and controlling nature. The next period brought immense loss in various forms too. I guess it was just life on life’s terms and how I navigated it, grieving and growing while looking for the beautifully satisfying moments. I hope you’ll join me on this journey too. I’ll attempt to post more often for my faithful readers, and I’m looking forward to reading about your experiences as well—your support keeps me doing what I’m doing. ■
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VOICES BLOGS AND OPINIONS FROM POZ.COM
HUGS OK
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HERE WERE 1,033 PEOPLE in attendance at the 2022 Biomedical HIV Prevention Summit. Thank you to everyone who made the meeting a success. After two years of isolation, I needed this meeting more than I realized. My chosen family heals my soul. Buttons were the favorite swag. People wore them to signal their comfort hugging. They said “Hugs OK,” “Fist Bump/Elbow” and “No Hugs, Thank You.” I appreciate everyone who chose to wear a mask, as COVID-19 is not over. There was only one request for a rapid COVID test, and the result was negative. NMAC is committed to transparency. Our relationship is built on decades of trust and collaboration. That means sharing information— no matter how difficult. Thank you for all the emails and social media posts. I agree it was good to be back together. Pictures posted on Facebook and Instagram document the diversity of our movement. A white friend shared that NMAC’s meetings were an important experience of what it means to be “other.” To be in a space where you are not the majority can be humbling and scary. It is important
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to understand, support and, dare I say, love the communities our movement needs to reach. HIV introduced colleagues from different worlds, and my life is so much richer. COVID gave a renewed appreciation for our friendships. Thank you for joining us in Chicago. It was amazing to be back together. I did not speak at this year’s summit. That was purposeful. At some point, I’ll be retiring (this is not an announcement), so the agency works to bring new voices to the table, particularly NMAC employees. I’m proud and blessed to have staff who don’t need me. This allows me to be me. After 33 years on the job, it is still an amazing privilege to speak truth to power, to talk about race and not hide behind the “social determinants of health,” to celebrate being gay without the cover of “men having sex with men.” The Black AIDS Institute calls out being unapologetically Black in its solutions to end the epidemic, and I’m there for it. NMAC works hard to make our meetings a safe space where people can be themselves. Right now, the world is very scary. It’s good to be with family during these difficult moments.
There was the public meeting, and then there were the conversations that happened privately. In the past, people of color were mostly tokenized in these chats. We got to the table because Reggie Williams, Kiyoshi Kuromiya, Dennis deLeon, Marty Prairie, Janet Mitchell and many others fought for us. NMAC’s backdoor discussions were about the Minority AIDS Initiative and the president’s national pre-exposure prophylaxis (PrEP) initiative. These two issues are intertwined with our fight for racial justice and health equity to end the U.S. HIV epidemic. History will judge what happened to the Minority AIDS Initiative, so we are fighting to make sure that the lesson does not repeat. I’m writing publicly about these conversations because there are millions and, in the case of a national PrEP initiative, billions on the table. We desperately need a united front. This will be a test of our movement’s leadership. The fact that our struggle happens in the middle of the fight for the soul of America is not lost on me. It’s time to get busy. Right now, solutions are being considered that will impact our ability to end the HIV epidemic in America. ■
(FABRIC) ISTOCK
In a blog post titled “What a Summit!” NMAC executive director Paul Kawata shared how good it felt to be back at the 2022 Biomedical HIV Prevention Summit, which took place in Chicago in April. Below is an edited version.
Isn’t it time we treat sexual wellness like part of our overall wellness? We think so too. Avita Pharmacy is here to help everyone – of every walk, talk, and sashay of life – take care of the whole them (sexy time parts and all). To learn more about our compassionate, gender-affirming care scan the QR code below. Let’s get SEXUWELL ! TM
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CARE & TREATMENT BY HEATHER BOERNER
Move Better After Leg Exercises
DOES LOW T MATTER? Middle-aged men living with HIV may have low testosterone levels more commonly seen in older men, according to a study published in the journal AIDS. Men with a longer duration of HIV treatment and viral suppression had lower testosterone than their less treatment-experienced peers, but those with low T still had the same robust sex lives as those with higher levels. Marie Lachârche, MD, of the Cochin-Pasteur Center for Clinical Investigation in Paris, and colleagues asked 240 mostly gay and bisexual men living with HIV to donate blood samples and undergo bone density testing. Among these participants, 9% had clinically defined low free testosterone levels. That’s double the rate of HIV-negative middle-aged men and more in line with levels typically seen in older men. Men with lower testosterone were a bit older than the study population as a whole (median 46 versus 43 years). What’s more, they had a longer duration of HIV treatment (median seven versus four years) and undetectable viral load (median five versus three years). They also had more experience using nucleoside reverse transcriptase inhibitors (NRTIs), protease inhibitors and integrase inhibitors. In particular, men who had used the NRTI efavirenz were nearly four times more likely to have low testosterone. Men with lower testosterone also had a higher body fat percentage and a lower nadir (lowest-ever) CD4 count. That makes sense, given that low CD4 counts have previously been linked to low testosterone. But the reason for the differences related to the type of HIV treatment is unclear. What was clear is that having lower clinical measurements of testosterone was not associated with poorer sexual health. Men with low T had rates of erectile dysfunction and depression comparable to those with higher levels, and they reported similar quality of life.
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A nice-looking butt isn’t the only reason to add leg strengthening exercises to your fitness routine. A study published in the South African Journal of HIV Medicine found that moderate leg strength training—like squats and lunges—was associated with better movement and balance among HIV-positive people with chronic pain due to peripheral neuropathy. Abdulsalam Yakasai, PhD, and colleagues at the University of KwaZulu-Natal recruited 102 people with peripheral neuropathy to participate in a randomized trial of a strength exercise intervention. Just over half were women, and the median age was 36 years. Most didn’t develop neuropathy until after they started antiretrovirals. Although the study didn’t evaluate the impact of exercise on pain itself, it found that the 51 people who did progressive leg muscle training using gym equipment for 12 weeks saw their balance and walking gait improve. Meanwhile, the 51 people who didn’t do anything different saw little change. “The use of progressive resistance exercise could minimize residual disabilities” from peripheral neuropathy related to HIV, the researchers wrote.
COMMUNITY-INFORMED DRUG POLICY
(LEG PRESS MACHINE) DREAMSTIME.COM; ALL OTHER IMAGES: ISTOCK (MODELS USED FOR ILLUSTRATIVE PURPOSES ONLY)
Speak Up for Menopause Care Hormones can improve quality of life in menopause, but women aging with HIV aren’t getting the support they need, according to a study published in the Journal of Acquired Immune Deficiency Syndrome. Elizabeth King, MD, of the University of British Columbia, and colleagues evaluated access to and discussions with health care providers about menopausal hormone therapy among Canadian women living with HIV. Of the 464 women who were perimenopausal or postmenopausal, nearly half (48%) reported symptoms like moderate to severe hot flashes that could qualify them for hormone replacement therapy. But just 12% had ever taken hormone therapy to manage their symptoms, and only 6% were currently using it. This is despite the fact that 45% had broached the topic of menopause with a health care provider. But that’s just the average. Only 37% of Indigenous women and 36% of Black women had ever discussed menopause with a provider. When it came to actually using menopausal hormone therapy, Black women were 58% less likely to do so than their white peers. All of this “hints at a gap in care for midlife women living with HIV,” the researchers wrote. These findings “underscore the need for provider education and menopause management within HIV care.”
The Biden administration unveiled the country’s inaugural National Drug Control Strategy in April. While it still includes law enforcement initiatives, like stopping drug trafficking and targeting drug cartel financial networks, it is notable for a different reason. “This new strategy is the first ever to emphasize working directly with people who use drugs to prevent overdose and infectious disease transmissions, improve their physical, mental and social well-being and offer flexible options for accessing medical care and substance use treatment,” says Harold Phillips, director of the White House National Office of AIDS Policy. For instance, the strategy uses a “whole of government” approach, including integrating harm reduction strategies into the plan. These include initiatives such as expanding access to the overdose-reversal drug naloxone, fentanyl test strips and syringe exchange programs—approaches people in the HIV field have advocated for years. (See “A Change Is Coming to Scott County,” page 32.) The strategy also draws from another approach spearheaded by HIV advocates: It encourages adding health care clinics and other services at syringe exchange sites. The IDEA Exchange in Miami, for instance, tests for and treats HIV at the exchange and allows clients to leave their medication in on-site lockers to prevent them from being lost or stolen. In addition, the strategy calls for expanding housing options and community programs for people who use drugs as well as making medication-assisted therapy for addiction more widely available. All of these approaches are backed by research showing that lower barriers to care lead to better health outcomes. “This evidence-based approach,” Phillips says, “builds trust and engagement with people at risk for an overdose.”
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RESEARCH NOTES BY LIZ HIGHLEYMAN
TREATMENT
CURE
CONCERNS
PrEP Barriers
Cabenuva for Teens
Antibody Therapy
Lung Cancer
Pre-exposure prophylaxis (PrEP) prescriptions are supposed to be free under the Affordable Care Act (ACA), but barriers persist. Some health plans don’t cover all available PrEP options (Truvada or Descovy pills and long-acting Apretude injections). What’s more, many insurers do not include lab tests and other related services. PrEP provision via telehealth increased during the COVID-19 pandemic, but a small survey by the Kaiser Family Foundation revealed that white gay and bisexual men are most likely to use tele-PrEP. The survey also found that a majority of private companies may be charging fees for tele-PrEP services. Another study, conducted before the ACA PrEP coverage rule went into effect in January 2021, showed that about 8% of people did not pick up PrEP prescriptions called in for them. People with health insurance who had a high medication co-pay were four times more likely to abandon their prescription. And people new to PrEP, women, Black people and young people all had higher rates of PrEP abandonment.
The Food and Drug Administration (FDA) recently extended the indication for Cabenuva (injectable cabotegravir plus rilpivirine) to include adolescents ages 12 and up. Cabenuva was initially approved as a once-monthly regimen, but in February, the FDA authorized every-other-month injections, meaning eligible people can take their antiretroviral therapy just six times per year. The federal agency also recently authorized a new dosing regimen that allows people to start the injections immediately without first taking cabotegravir and rilpivirine pills for a month. Daily HIV prevention pills are highly effective, but studies showed that the long-acting injections work just as well. What’s more, some people find long-acting injections more convenient, which could lead to better adherence. This may be especially important for adolescents, as some research has found that they may struggle with adherence. Other advantages include not having to think about HIV treatment every day and not having pill bottles that could reveal one’s HIV status.
Broadly neutralizing antibodies (bnAbs) can delay HIV rebound and even lead to long-term remission. People with HIV normally make antibodies against the virus, but HIV can usually escape them. Some people, however, produce more efficient antibodies. One recent study tested a combination of two such bnAbs, 3BNC117 and 10-1074, in people with chronic HIV who had been on antiretroviral therapy for at least a year. Thirteen out of 17 people who stopped their antiretrovirals two days after the first antibody infusion maintained viral suppression for at least 20 weeks, and two participants who received all seven antibody doses remained suppressed after one year. In a second study, people new to HIV treatment received 3BNC117, the latencyreversing agent romidepsin or both along with antiretroviral therapy. After a year on treatment, four out of five participants whose HIV was fully sensitive to 3BNC117 maintained a viral load below 5,000 during a 12-week antiretroviral interruption, and one man still had an undetectable viral load 3.7 years later.
Lung cancer screening, which can detect tumors at an earlier stage, may be even more important for people living with HIV. HIV-positive people are more likely to smoke, and some studies show they have a higher rate of lung cancer than the general population. The U.S. Preventive Services Task Force recommends annual lung cancer screening using low-dose CT scans for people ages 50 to 80 who have at least a 20 pack-year smoking history. A small Spanish study suggests that screening HIV-positive people for lung cancer results in a high diagnosis rate with few unnecessary procedures. Among 141 people seen at a Madrid HIV clinic, 52 (37%) had evidence of lung nodules. Those with suspicious nodules underwent invasive diagnostic procedures, such as biopsies, and five were diagnosed with lung cancer. All five underwent surgery, as did an additional four people who turned out not to have cancer. The diagnosis rate was 3.6%, meaning 28 people would have to be screened to detect one case of lung cancer.
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ALL IMAGES: ISTOCK
PREVENTION
BASICS
BY LIZ HIGHLEYMAN
CLINICAL TRIALS Study participation can be a gateway to better therapies for yourself and others.
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VERYTHING WE KNOW ABOUT HIV prevention and treatment comes from research involving people at risk for or living with the virus. Joining a clinical trial can be a good way to access new therapies and contribute to science, but it’s important to weigh the risks and benefits. Clinical trials are a key part of the multistep process for testing new prevention, treatment or cure approaches. • Preclinical: Most experimental therapies first undergo testing in a laboratory, followed by animal studies. But promising activity in a lab or in animals does not mean a drug will work in people. • Phase I: Early safety trials usually include 10 to 100 participants, often starting with healthy volunteers. They look for common side effects and collect information about pharmacokinetics, or how a drug is processed in the body. • Phase II: Mid-level trials typically include a few hundred participants. They assess whether a new therapy appears safe in a larger group and gather preliminary information about efficacy. • Phase III: The largest and longest trials, typically involving hundreds or thousands of participants, test how well a therapy works compared with other options. Less common side effects may show up only after a drug is used by many people over a longer period. • Phase IV: After a drug has been
approved, post-marketing studies are done to see how well the therapy works in the real world. Randomized controlled trials are the gold standard for testing new drugs. A controlled trial means participants are randomly assigned to get the experimental therapy or a comparison intervention—for example, the current standard of care or a placebo. Randomization means any participant has an equal chance of ending up in any study arm, which ensures that the groups are otherwise similar. Trials for new prevention methods follow a similar pathway, but the safety bar is higher because they will be used by healthy people. Other types of trials assess behavioral interventions, such as exercise or smoking cessation. HIV cure trials are more complex and can involve greater risk. To determine whether a cure strategy leads to longterm remission, participants may be asked to temporarily stop antiretroviral therapy, which could lead to disease progression and HIV transmission. A good study design is essential for ensuring that clinical trials provide reliable information. It is important that trials enroll the full range of people who will use a new therapy, including women, transgender people and participants from diverse racial and ethnic groups. Your HIV care team, advocates and
support groups can be good sources of information about available clinical trials. The National Institutes of Health’s ClinicalTrials.gov website lists open studies for all conditions. When considering a trial, learn all you can about the therapy being tested and what other options are available. Find out the frequency of study visits and whether the trial reimburses expenses. Don’t be afraid to ask questions! Before agreeing to join, you must sign an informed consent document, but this is not a contract—you have the right to withdraw at any time for any reason. Benefits of trial participation can include early access to promising new therapies, care delivered by leading experts and altruism—knowing you are contributing to science and helping others. Drawbacks can include time-consuming study visits, the need to forgo other therapies and the risk of side effects. And in a randomized trial, you might not get the experimental treatment. Remember, trials of new antiretroviral drugs, HIV prevention methods and cure strategies can’t offer guarantees. Researchers don’t yet know how effective experimental therapies will be, and they can’t rule out unforeseen adverse events. Despite this uncertainty, clinical trials can be a gateway to better prevention and treatment for yourself and other people living with HIV. ■
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NUTRITION & FITNESS ADVICE ON DIET AND EXERCISE
WHAT KIND OF EXERCISE IS BEST? Generally speaking, there are two types of exercise:
Be bold and experiment—it will still be delicious! THERE’S NOTHING BETTER THAN CREAMY fresh mozzarella on pizza. It complements any ingredient, but it works especially well with salty artichokes and black olives. SERVINGS: 6 / MINUTES PREP: 20 / INGREDIENTS: 16 INGREDIENTS 1 premade whole-wheat pizza dough 1 cup canned artichoke hearts, drained, patted dry and halved ¼ cup pitted black olives, sliced ¼ cup capers, drained 1 (8-ounce) ball of fresh mozzarella cheese, diced 3 cups arugula 2 tablespoons olive oil Panko or cornmeal, for sprinkling salt and pepper, to taste
FOR THE QUICK TOMATO SAUCE 2 tablespoons olive oil 1½ pounds ripe plum tomatoes (about 6 to 8), coarsely chopped 1 to 2 garlic cloves, smashed and thinly sliced lengthwise 1 small dried red pepper, seeds removed (optional) ½ teaspoon salt or to taste 1 tablespoon freshly grated Parmesan cheese (optional)
DIRECTIONS 1. Preheat the oven to 500 degrees. Put two baking trays in the oven or pizza stone if you have one. Prepare the tomato sauce as outlined above. 2. Sprinkle Panko or cornmeal onto a large sheet of parchment paper. Roll out the dough onto the parchment paper; press out the dough into a 12-by-8-inch rectangle or to fit your pizza stone. Split the dough into two balls if necessary. 3. Spread the tomato sauce evenly onto the dough. Top with artichokes, olives and capers, and then top evenly with cheese. 4. Using the parchment paper, slip the pizza onto the heated baking tray or pizza stone. Bake on lowest rack for 10 to 15 minutes, or until crust is golden and cheese is bubbling. 5. In a medium bowl, toss together arugula, olive oil, salt and pepper. Set the bowl aside. 6. Using the parchment paper, slip the finished pizza onto a cutting board. Top with arugula and cut into slices. Serve. NUTRITION FACTS (per serving) Calories: 368; fat: 21 g; saturated fat: 8 g; polyunsaturated fat: 2 g; monounsaturated fat: 10 g; carbohydrates: 32 g; sugar: 5 g; fiber: 6 g; protein: 15 g; sodium: 744 mg CHEF TIPS Pre-rolled and prebaked crusts make for a quick pizza fix when you are in a hurry. Buy raw pizza dough to roll out yourself. Pizza toppings are good on many bread products. ©2022 Fred Hutchinson Cancer Research Center, a 501(c)(3) nonprofit organization. Used by permission.
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Strength training exercise tones and strengthens muscles. Examples include lifting weights, using resistance bands and doing exercises such as push-ups, sit-ups, pull-ups and leg squats. It’s helpful to pick a type of exercise you enjoy. The goal is to find activities that fit into your daily life so you’re motivated to do them regularly. Some people prefer to start their day with exercise in the morning, while others prefer to exercise at night. Many people enjoy participating in team sports, while others prefer solo activities. Yoga, Pilates, tai chi and qi gong—which promote strength, balance and flexibility—can be good options, especially for people who are older or have physical limitations. Classes are often available online. Try varying your activities to prevent boredom. Take advantage of the weather and the seasons—for example, swim in the summer, ski in the winter and work out at the gym when it’s raining. Remember, everyday activities such as walking the dog, gardening and dancing contribute to your total weekly physical activity. This is an excerpt from the “HIV and Exercise” Basics page on POZ.com.
(WHITE BOARDS) ISTOCK; (PIZZA) COURTESY OF COOK FOR YOUR LIFE/JOE GAFFNEY
ARTICHOKE, ARUGULA & OLIVE PIZZA
Aerobic exercise gets your heart pumping and your breathing rate up. This type of exercise burns fat and improves cardiovascular function. Examples include walking, hiking (especially with hills), running, bicycling, swimming and skating.
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CALL FOR NOMINATIONS The e 2022 POZ 100
POZ is seeking nominations for the 2022 POZ 100. The POZ 100 was established in 2010. This year’s list will celebrate Latino advocates making a difference in the fight against HIV/AIDS and will include both people living with HIV and those who are HIV negative. To submit a nomination (self-nominations are welcome) and for more info, go to POZ.com/nominate.
Tom Perrault lives in San Francisco.
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IN THIS ESSAY, TOM PERRAULT RECOUNTS HIS JOURNEY TOWARD HOPEFULLY CONTROLLING HIV WITHOUT MEDICATION. BY TOM PERRAULT PHOTOGRAPHY BY ANGELA DECENZO Editor’s note: Tom Perrault is a consultant, a human resources executive and an attorney. He was board chair of the San Francisco AIDS Foundation (SFAF) and also served as chair of SFAF’s $15 million capital campaign.
“OH, I HAVE A STUDY THAT YOU’RE GOING TO join,” my doctor, Lisa Sterman, MD, MPH, said to me almost flippantly. It was August 27, 2020, and I had gone to see her in San Francisco for my regular checkup. What I didn’t fully understand then was that this HIV cure trial was the fi rst of its kind. In fact, according to Rowena Johnston, PhD, vice president and director of research at amfAR, The Foundation for AIDS Research, it’s the most complex cure trial to date. Sterman knew that I was a good candidate for the study. When I tested HIV positive in 2004, I immediately got effective treatment, which had become widely available in 1996. Because the side effects of the early drugs were potentially severe, many people delayed going on them until absolutely necessary. This was a source of legitimate medical debate in 2004, with many doctors encouraging patients to delay. But I was anxious to get started, potential side effects be damned. And that decision made me eligible for this cure study. The researchers wanted candidates who had started treatment for the virus early in the infection, before it had time to do some lasting harm or damage.
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Sterman was aware that I had participated in HIV trials previously. When someone asks me to participate in science, I always say yes. But I never get my hopes up for these trials. Most of the time, I’m simply donating some tissue, or researchers are administering tests. I rarely ever think I’ll accrue any personal benefit from them. I see them instead as being beneficial to my community in the long term. As a gay man coming of age in the late ’80s in San Francisco, I saw a whole generation before me quickly disappearing. I stand on the shoulders of all the people who participated in early clinical trials so that I could take a daily pill to keep my HIV in check. It’s the tiniest of paybacks for all their sacrifices. It wasn’t until I went to Zuckerberg San Francisco General Hospital a week later to get screened for this new trial that I really tuned in to just how groundbreaking it would be. And with 37.7 million people living with HIV and more than 1.5 million new cases each year, we desperately need groundbreaking. The trial is a joint collaboration between amfAR and the University of California San Francisco dating back to 2016, and its goal is to train the body to control HIV without the use of any medicines. While not a cure per se (some HIV is expected to remain undetectable somewhere in the body), it’s a functional cure, meaning that, if the trial works, I would no longer have to take any medication and would be unable to transmit HIV. (See “A Complex Cure Trial,” page 25, for more details.) For the first time, I started to get excited. But, like any good medical professionals, the study doctors downplayed expectations. Still, a cure? I had only ever known the specter of HIV/AIDS as a constant nagging companion. The treatment would be a series of injections and transfusions over the course of months, after which I would go off my HIV meds and let my body work its supposed new magic. Fingers crossed it would actually work or even get close.
’90s, I’d never come out on such a large scale as a man living with HIV. While definitely a bit apprehensive, I was also excited to be participating. If others couldn’t share my joy, then that was their issue. I was going to focus on the people who were willing to join me for the ride and share my experience. What I hadn’t expected, however, were the myriad strangers who also followed along via my social media posts. Although I wasn’t actively seeking new followers for this experience, I would one day see a number of people from Turkey begin to comment or send me direct messages seeking more information. A few days later, it was folks from the Philippines. Then Nigeria. Then the Middle East. And so on. Not only were people desperately seeking information on HIV treatment, but many also confessed secrets that they hadn’t shared with anyone else before. They spoke to me about the loneliness and stigma of being HIV positive with no one to support them. About being gay but scared to come out or even act upon it. About the abuse they had suffered that led to their diagnosis. And about their suicidal ideations. I began setting aside time after each post to reply to each person’s questions or comments. Some just needed to share their feelings and know that they had been heard. Some wanted more information. And some wanted to be my ongoing pen pal because, even though a stranger, I was all they had. I was good with that.
“I CAN’T LET MY HOPE GET TOO FAR AHEAD OF REALITY.”
WHEN I FIRST STARTED TREATMENT, I BEGAN POSTing about the process on Instagram and Facebook to let my friends and acquaintances know what I was about to undertake. But I hesitated for a few weeks before saying anything because, while I’ve been out as a gay man since the early
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THE DOCTORS SET JULY 3, 2021, AS THE DATE I would go off my HIV medication to see what my body could do on its own. This was nearly a year after I had first heard of the study. I was anxious to finally see what would happen. My doctors told me that they expected my HIV to rebound by the end of August or early September. With my expectations firmly in check, I went in every week for a blood draw, per the protocol. Each week, the blood work showed that I was undetectable for HIV. This continued for months. Every week felt like a gift. I had an agreement with the nurse practitioner in charge of my weekly blood draws that she would call me when (if?) the virus ever reappeared in my body before sending her usual notification email. As I sat on a plane ready for takeoff to Washington, DC, to
spend Thanksgiving with family in Virginia, I saw that someone had left me a voice mail. It was the nurse practitioner letting me know that my virus had been detected at 34 copies per milliliter. Later that night, when I was alone, an intense grief hit me. Unexpected tears sprang to my face. I didn’t realize just how invested I had become in remaining undetectable. Which, of course, was foolish because the entire point of the experiment was to have the virus return so that the body could handle it on its own. When you live for so long without hope, it’s hard not to latch onto anything that might be a silver bullet. I soon shared the news with my family. However, I did take a few weeks to share it on social media. I felt like I was letting everyone down. I also wanted to get more blood work done to see whether this was a mere blip or the start of the virus coming back in full force. My doctors had warned me that once the virus returned, they expected to see a sharp increase in my viral load (the amount of virus in my blood). A high viral load is generally considered above 100,000 copies, but you could have 1 million or more. The next week my viral load had gone from 34 copies to 363. The experimental protocol didn’t begin an “official” tracking of the virus until I crossed 400 copies, which it did the following week when it jumped up to 1,377 in early December. The following week, I dipped to 1,031 copies. Where was this sharp spike they were predicting? The week before Christmas, my viral load went back up, to 1,430. Unfortunately, no one could tell me what any of this meant because a cutting-edge experiment like this means no one could possibly know. I WAS LOOKING FOR A PATTERN OR MEANING IN A set of numbers that didn’t exist. All I could do was hope that my viral load would return to being considered undetectable once again. The week between Christmas and New Year’s Eve was a hard one for me, and I had to skip my blood work. I flew home from New York on Sunday, December 26, and awoke on Monday feeling terrible and felt ill all week. I stayed in bed for multiple days. It had been a long time since I’d felt so sick. Many at-home tests and later a PCR test demonstrated that it wasn’t COVID-19. So I feared the worst: that the longawaited spike had come and was wreaking havoc on my body. I nervously went in the first week of January prepared for the bad news. To my surprise, my viral load had dropped to 863. My body wasn’t being pummeled by the virus after all. Rather, it seemed that my body was pummeling the virus, and I was laid up because it apparently takes a lot out of a body to beat HIV. The next week, my viral load dropped to 478 copies, and my body felt great. I called the lead doctor to help me make sense of these results. The answer he gave me is one that is familiar to me by now: Who knows? I’m doing better than they expected, and the researchers are also trying to make sense of it all. They won’t be able to say anything more defin-
A COMPLEX CURE TRIAL EXPERTS THINK ACHIEVING A functional cure for HIV will require a combination approach, as is true for antiretroviral treatment. In the trial Tom Perrault has joined, participants will first receive a therapeutic vaccine that contains DNA instructions for making HIV proteins, followed by a booster, to enhance CD8 T cells’ ability to kill virus-infected cells. Next, they will get a TLR9 agonist to coax HIV out of hiding and promote natural killer cell activity. They will also receive broadly neutralizing antibodies that can inactivate diverse strains of HIV. Finally, they will undergo a carefully monitored analytic treatment interruption to see whether HIV remains suppressed after they stop antiretrovirals. The study aims to enroll 20 people living with HIV, 15 of whom— including Perrault—started treatment at an early stage. According to Rowena Johnston, PhD, amfAR’s vice president and director of research, this is “by far the most complex cure trial that anyone has undertaken to date.” —Liz Highleyman
itive for a long time, but they cautioned me that the virus is crafty—it’s a fighter and knows how to survive. So while my immune system currently has the upper hand, I can’t let my hope get too far ahead of reality. I’ve fallen prey to magical thinking before, and I’m not going back there again. This is a science experiment, for sure. But for me, it’s also so much more. It’s a lesson in patience, perseverance, resilience, being comfortable with the unknown and, yes, optimism. I know that whatever happens, though, we’ve already won. Science has won. The experiment may succeed or fail in my body, but with the information my doctors have gained, we’ve already made extraordinary progress in the fight against HIV. And I’m ready to celebrate that. ■
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AFTER ADVANCES IN HIV THERAPY, LONG-ACTING ANTIRETROVIRALS AND LONG-TERM REMISSION ARE THE NEXT FRONTIERS.
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BY LIZ HIGHLEYMAN
H
IV CARE HAS COME A LONG WAY IN THE more than 40 years since the Centers for Disease Control and Prevention published the first report of AIDS in June 1981. The combined efforts of researchers, clinicians, public health officials, activists and people living with HIV have led to amazing advances in prevention and treatment. And despite many setbacks, cure research is also making progress. The earliest antiretroviral drugs, such as AZT, were only marginally effective. Although they could halt HIV replication temporarily, the virus soon developed resistance. The first big breakthrough came in the mid-1990s with the advent of highly active antiretroviral therapy, drug cocktails that include HIV protease inhibitors or non-nucleoside reverse transcriptase inhibitors (NNRTIs). By targeting multiple steps of the viral life cycle, combination therapy was able to keep HIV in check over the long term. The new regimens were unbelievably effective, knocking viral load down to an undetectable level and allowing CD4 T-cell counts to recover enough to prevent opportunistic illnesses. Within a year after their introduction, AIDS-related hospitalization and death began a steep decline. But the early cocktails were difficult to use, sometimes involving handfuls of pills taken multiple times a day with strict food requirements. What’s more, early antiretrovirals often came with drug interactions and side effects that made it hard to maintain adherence. But scientists never let up on their efforts to develop better treatment, and activists, while demanding access for all, never stopped pushing for meds that were more
effective, better tolerated and easier to take. In 2006, the Food and Drug Administration (FDA) approved Atripla, the first once-daily single-tablet regimen, or all-in-one pill. The following year, the first integrase inhibitor made its debut. And in 2021, the FDA approved Cabenuva (cabotegravir/rilpivirine), the first complete long-acting injectable regimen. In parallel, researchers have made remarkable advances in biomedical prevention. In 2012, the FDA approved Truvada for pre-exposure prophylaxis (PrEP), a once-daily pill that lowers the risk of HIV acquisition by around 99%. Earlier this year, the agency gave the nod to Apretude (cabotegravir), a long-acting PrEP injection administered every other month. And despite many failures, scientists and advocates have not lost sight of their original goal of an effective HIV vaccine. Today, most people living with HIV can control the virus with a single once-daily pill or every-other-month injections, and those who start treatment promptly and receive good care can expect a near-normal life span. But researchers and advocates are working on further improvements to fill the remaining gaps. These include more effective meds for long-term survivors with extensive drug resistance and simpler, more affordable regimens for people who still struggle with access and adherence. Even with improvements in prevention and treatment, a cure remains the holy grail of HIV research. A small number of people have provided proof of concept that a cure—or at least long-term remission, sometimes called a functional cure—is possible. Today, scientists are exploring a wide range of strategies to achieve a broadly accessible functional cure for the nearly 40 million people living with HIV worldwide. LONG-ACTING TREATMENT Although daily antiretroviral therapy is highly effective, it requires thinking about HIV and remembering to take pills 365 days a year, so long-acting treatment has been eagerly awaited. The fi rst complete long-acting regimen, Cabenuva, was initially approved as a once-monthly injection, but in February, the FDA approved an every-other-month regimen. Cabenuva consists of an extended-release formulation of ViiV Healthcare’s integrase inhibitor cabotegravir plus an
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who used suboptimal drugs—sometimes one at a time—early in the epidemic and have multidrug resistance that leaves them with few treatment options. As reported at CROI, the CAPELLA trial showed that twice-yearly lenacapavir injections plus an optimized background regimen led to viral suppression in more than 80% of heavily Steven Deeks, MD, (left) and Chloe treatment-experienced people with Orkin, MD multidrug-resistant HIV. Likewise, the CALIBRATE trial showed that lenacapavir injections plus a single oral antiretroviral suppressed the virus in people starting treatment for the first time. Lenacapavir is also being studied as a twice-yearly PrEP option. But both drugs have hit snags in their development. Trials of islatravir were put on hold late last year after HIV-positive participants in treatment trials experienced declining CD4 counts and HIV-negative volunteers in PrEP studies saw a drop in total lymphocyte counts. The future of islatravir is currently unclear. Studies of lenacapavir were also paused last December due to concerns about the type of glass vial used for the injectable formulation, but the FDA lifted the hold in May, after Gilead switched to a different type of glass. Further back in the pipeline, broadly neutralizing antibodies (bnAbs), a type of immunotherapy, hold promise for treatment, prevention and cure strategies. Other novel candidates include two HIV maturation inhibitors from GSK. Most people with HIV do make antibodies against the virus, but HIV mutates rapidly and is usually able to escape them. However, some people can produce more broadly active antibodies that target parts of the virus that don’t change much. Engineered versions of these antibodies are now under study. Research presented at CROI showed that more than 40% of children born with HIV who switched from oral antiretrovirals to monthly infusions of two bnAbs (VRC01 and 10-1074) maintained an undetectable viral load for six months. The Antibody Mediated Prevention trials, which tested bnAbs for PrEP, found that VRC01 did not prevent HIV overall, but it did lower the risk of acquiring HIV strains that were sensitive to the antibody. Experts expect that bnAb cocktails will be needed to overcome viral resistance. “Long-acting therapies are a paradigm shift in how we deliver care,” according to Orkin. But she acknowledges that drug resistance may be a cost of long-acting treatment. “It’s going to be a trade-off between the burden of daily oral therapy versus the freedom of six-monthly treatment with the potential for resistance in a very small number of people,” she says. “It’s important that people have the chance to make their own decisions.”
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injectable version of Janssen’s NNRTI rilpivirine. It involves two intramuscular injections in the buttocks administered by a health care provider. The ATLAS trial showed that people who switched from a standard oral regimen to monthly Cabenuva were about as likely to maintain viral suppression as those who stayed on daily pills. The ATLAS-2M study showed that those who received the injections every eight weeks responded as well as those who did so every four weeks. The FLAIR trial found that Cabenuva is also effective for firstline treatment. For HIV prevention, studies showed that Apretude—cabotegravir injections alone—work even better than daily PrEP pills, which are highly effective. Study participants reported greater satisfaction with Cabenuva or Apretude compared with daily oral treatment or PrEP. Reasons for preferring the injections include greater convenience—which can lead to better adherence—and not having pill bottles that could reveal one’s HIV status or risk. But access to Cabenuva remains a challenge. “Although these therapies may be my present tense, they still represent the future for many people worldwide,” says Chloe Orkin, MD, of Queen Mary University of London, who gave an overview of the future of HIV treatment and prevention at this year’s Conference on Retroviruses and Opportunistic Infections (CROI). “It’s really important that new compounds are accessible everywhere and that they are not the domain of the rich.” Speaking at a CROI community forum, Jim Pickett, a senior adviser at AVAC, noted that while the recent approval of an every-other-month regimen is a big deal—some people will now be able to take their HIV treatment just six times a year—new formulations that could be self-administered would be even better. “You can imagine people being able to give shots themselves or have someone else give them a shot at home. What a revolution that would be!” Two other long-acting meds, Merck’s islatravir and Gilead Sciences’ lenacapavir, have shown promise in clinical trials. Islatravir, the first nucleoside reverse transcriptase translocation inhibitor, showed good activity in a once-daily combination with the NNRTI doravirine, but because doravirine is not suitable for long-acting therapy, Merck paired islatravir with its experimental long-acting NNRTI, MK-8507, in a once-weekly regimen. Islatravir is also being studied for PrEP, both as a once-monthly oral regimen and as an implant that could potentially provide protection for a year. Lenacapavir, a long-acting HIV capsid inhibitor, works differently than existing drugs and remains active against virus that has developed resistance to other antiretroviral classes. This is good news for people with long-term HIV
CURE RESEARCH Despite advances in HIV treatment, many people living with the virus hold out hope for a cure. Some people still experience side effects from antiretroviral therapy, and chronic HIV infection can lead to a host of health problems even in people with an undetectable viral load. What’s more, providing lifelong treatment for the millions of people with HIV worldwide is a daunting challenge. “I’m not sure complete HIV eradication is going to be achievable, but near-complete eradication with a little help from the immune system is where we believe the action is,” cure researcher Steven Deeks, MD, of the University of California San Francisco told POZ (see “Searching for a Cure,” page 36). “I’m more optimistic than ever that in 10 years we will be studying something that could very well work.” Scientists are exploring many avenues in the search for a cure. While antiretrovirals can keep HIV replication under control as long as treatment continues, the virus inserts its genetic blueprint into the chromosomes of human cells and establishes a long-lasting latent reservoir that is unreachable by antiretrovirals and usually invisible to the immune system. These socalled HIV proviruses can lie dormant in resting immune cells indefinitely in the presence of antiretrovirals, but they usually start churning out new virus soon after the drugs are discontinued. “Over the past decade, HIV cure research has greatly intensified, but it remains clear that we will not cure HIV until we better understand where and how the virus hides and we also get much better at measuring the HIV reservoir,” says Sharon Lewin, MD, director of the Peter Doherty Institute for Infection and Immunity in Australia. The past decade has seen some progress in the quest for a functional cure, but there have also been several disappointments. Only a few people are widely regarded as cured: the late Timothy Ray Brown (the Berlin Patient), Adam Castillejo (the London Patient) and possibly an anonymous woman dubbed the New York Patient. All of them received stem cell transplants from donors with a rare genetic mutation (CCR5-delta32) that blocks HIV from entering cells. But this procedure is far too risky for people who don’t need it to treat life-threatening cancer. Researchers have identified a small number of people who manage to naturally control HIV. Some (known as elite controllers) have never taken antiretroviral therapy, while others (known as posttreatment controllers) have been able to maintain viral suppression after stopping antiretrovirals. Two women, Loreen Willenberg (the San Francisco Patient) and the anonymous Esperanza Patient in Argentina, appear
to have eliminated HIV without ever taking antiretrovirals, and they may have achieved a natural cure. While such individuals are exceptional, they offer proof of concept that a functional cure is possible and offer clues that could help scientists achieve long-term remission for more typical people living with HIV. Researchers are exploring a wide range of cure strategies including “kick and kill,” which tries to flush dormant virus out of hiding using latency-reversing agents, and “block and lock,” which aims to keep latent proviruses in a permanent sleep. Some approaches attempt to replicate Brown’s cure by cutting out or turning off the CCR5 receptors HIV uses to enter cells. Another strategy uses CRISPR technology to snip HIV proviruses out of chromosomes. Still other approaches help the immune system fight HIV. Experimental interventions include drugs, therapeutic vaccines, broadly neutralizing antibodies, engineered T cells and gene therapy. One promising approach involves inserting genes into long-lived cells that could make antibodies forever. Vaccine tech nolog y— i nc lud i ng mRNA—has improved during the COVID-19 era, and experimental therapeutic vaccines have already cured monkeys. Most experts think combination approaches will work best. Deeks is currently leading a study— among the most complex cure trials to date—that combines a therapeutic vaccine, bnAbs and a TLR9 agonist to flush HIV out of hiding and control residual virus (see “My HIV Cure Trial,” page 23). Cure studies often require participants to undergo multiple procedures over an extended period. Ultimately, they are asked to temporarily stop treatment, with careful monitoring, to see whether they can maintain viral suppression without antiretrovirals. The studies now underway are not expected to cure the participants, but they will advance the science and help other people with HIV in the future. “Our studies are very intensive, and they have a fair amount of risk. Everyone is aware that these early studies aren’t going to cure anyone,” Deeks says. “The main reason people join these studies is altruism, and I haven’t seen altruism in the community so strong since the ’90s.” While these approaches may today seem like science fiction, researchers and advocates won’t be satisfied with just a few exceptional success stories. When it comes to long-acting treatment and a functional cure, they want widely accessible and affordable options for all people living with HIV. It took years after the advent of effective antiretroviral therapy for the medications to reach people in low-income countries. That’s a history no one wants to repeat. ■
“I’M MORE OPTIMISTIC THAN EVER THAT IN 10 YEARS WE WILL BE STUDYING SOMETHING THAT COULD VERY WELL WORK.”
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PEOPLE LIVING WITH HIV ARE MEETING THE ACCELERATING CHALLENGES OF THE OPIOID EPIDEMIC. BY HEATHER BOERNER
W
ISTOCK
HEN JERRICA HALL PUSHES THE STROLLER HOLDING her 2-year-old daughter, her younger child, down the sunbaked streets of Austin, located in Scott County, Indiana, she remembers the time—the years, really—when she walked down these same streets with a very different purpose. Seven years ago, newly diagnosed with HIV, Hall numbed the shock of her diagnosis by continuing to inject drugs—first the prescription opioid Opana (oxymorphone) and then heroin. Sex work helped her survive. Today, Hall, 31, is in recovery. She is taking HIV medications and has an undetectable viral load. And she helps other people who, like her, acquired HIV in Scott County during the 2015 outbreak. She works as a linkage-to-care and outreach specialist at the clinic where she gets treated for HIV, Foundations Family Medicine. “When someone’s in the dark and they come to the light,” she says of her work, “they can help someone else.” poz.com JULY/AUGUST 2022 POZ 33
While the opioid and injection drug use epidemic has slowed in her part of Indiana, she still knows and loves plenty of people who inject drugs. There are lots of people like Hall. According to a November 2021 POZ.com poll, 37% of respondents nationwide knew at least one person—sometimes up to four—who had died of an overdose. Last year, 103,598 people died of drug overdoses, and 77,766 of those deaths were attributed in whole or in part to opioid use, according to data from the Centers for Disease Control and Prevention (CDC). So far, evidence-based harm reduction practices, such as syringe services and the distribution of naloxone to reverse overdose, have not curbed ongoing HIV outbreaks, leading epidemiologists like Steffanie Strathdee, PhD, associate dean of global health sciences and a professor of medicine at the University of California at San Diego, to warn that “the trends are going in the wrong direction.” “It’s a substance use epidemic, with opioids being one player in that,” says Strathdee, who studies the overlap of the drug use and HIV epidemics along the U.S.-Mexico border. “More than 100,000 deaths last year. And it’s getting worse.”
people who’ve ever had a substance use disorder diagnosis are also more likely to have severe COVID symptoms, according to the National Institutes of Health (NIH). This is true even for people who have received COVID vaccines. But SARS-CoV-2 is not the only virus people who use drugs are more likely to get. Since 2017, sharing of syringes has driven HIV outbreaks in West Virginia, Minnesota, Pennsylvania and Oregon, among other places. Reusing injection equipment can also transmit hepatitis B and C. In the United States, about 11% of people who acquired HIV in 2018 (nearly 4,000 individuals) did so through reusing injection equipment. That includes 1,468 gay and bisexual men. Globally, 76 million people have acquired HIV through injection drug use since the beginning of the AIDS epidemic. And the burden of new HIV cases doesn’t fall equally across groups of people who inject drugs. For instance, injection drug use (IDU) is the second biggest risk factor for cisgender women with HIV (15%) after heterosexual contact (85%). For men overall, 5% of HIV cases are attributable to IDU. For gay and bisexual men who inject drugs, 4% of HIV cases are from IDU. An analysis of 2018 data published by the CDC found that while everyone who acquired HIV had either shared injection equipment or had unprotected sex or both, Black people reused other people’s syringes less often, had lower rates of condomless sex and got tested for HIV more often than their white counterparts. Still, they had the highest likelihood of acquiring HIV. When researchers looked at the causes, they found that while Jerrica Hall 63% of white study participants had access fights HIV and to sterile syringes through syringe exchange the opioid programs, only 40% of Black participants epidemic. did. Black folks were also 10% less likely than their white peers to access medication-assisted treatment.
MORE THAN 77,000 DEATHS AS A result of opioid use in 2021 is a staggering increase over 2017, when about 47,000 people died of opioid-related overdoses. Most of these deaths were attributed to fentanyl, a synthetic opioid up to 100 times more powerful than morphine. Today, fentanyl is cut into everything from methamphetamine to cocaine, says Strathdee, so people may take it without even intending to. The COVID-19 pandemic exacerbated the opioid epidemic, leading to an increase in overdoses. According to data published in the journal Population Health Management, tests conducted at a national laboratory following the declaration of the pandemic emergency in March 2020 revealed that positive tests for fentanyl increased by 35% and positive tests for heroin rose by 44%. Fentanyl contamination increased by 89% among people who also tested positive for amphetamines, 48% among those who used benzodiazepines, 35% among those also using cocaine and 39% among those using other opiates. Researchers attribute much of this to pandemic-related stress and a worsening of mental health. People who were already in recovery sometimes found it difficult to get the medication-assisted treatment—which can include prescription buprenorphine—needed to help manage their opioid use disorder. On top of that, pandemic isolation often disrupted social support networks, which have been found to be essential for drug use recovery. Then there’s COVID itself. Substance use disorder is one of the underlying conditions associated with a greater likelihood of getting SARS-CoV-2, the virus that causes COVID-19, and
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THE GOOD NEWS IS THAT ABUNDANT EVIdence points to several effective ways to control the opioid epidemic and address the spread of HIV and viral hepatitis via reused syringes. These include housing-first programs that don’t require people to abstain from drug use to get housing, decriminalization of both drug use and sex work, syringe services programs and access to HIV prevention, like pre-exposure prophylaxis (PrEP), at syringe service sites. “We wanted to build off what we learned from the HIV epidemic,” says Strathdee, who at a 2020 AIDS conference proposed the creation of an HIV and addiction medicine subspecialty. “You don’t blame people for their behaviors. We are creating the social, political and economic conditions that are putting people at risk. So the onus really needs to be on governments and policymakers.” But policymakers have produced mixed results in relation to
(HALL) COURTESY OF JERRICA HALL
“IT HAS CHANGED MY LIFE COMPLETELY.”
the opioid epidemic, especially in areas where lack of access to sterile syringes has led to HIV outbreaks. For instance, in 2019, the Department of Justice blocked the opening in Philadelphia of the United States’ first legal supervised drug consumption site. In 2021, the West Virginia legislature approved a bill that limits syringe programs by forcing clients to show ID to obtain services and also requires the programs to obtain specific licenses from local jurisdictions. Officials with the health department of Scott County, where Hall acquired HIV and started recovery, voted in 2021 to close the syringe services program credited with ending the 2015 HIV outbreak. At the same time, Strathdee says she sees some cause for hope. For the fi rst time, the White House Office of National Drug Control Policy is being run by a physician, and the office’s inaugural National Drug Control Strategy, released in April, includes evidence-based approaches to decreasing overdose deaths. These include the distribution of naloxone and fentanyl test strips and expanding licensing for medication-assisted treatment. The office has also released a template bill for state legislatures to use to expand access to syringe services programs, and White House drug czar Rahul Gupta, MD, MPH, told CNN’s Sanjay Gupta, MD, (no relation) that he is open to learning more about safe consumption sites along with all other harm reduction approaches. And while Philly’s supervised consumption site was never able to open, two such sites opened in New York City in November 2021; by January, they had already averted more than 100 overdose deaths. Safe consumption sites are also under consideration in Boston, Baltimore, Denver, San Francisco, Seattle and other cities. In San Diego, long a conservative stronghold, Strathdee says the department of health is interested in investing in a new piece of equipment for its syringe services program that can test samples of street drugs to help people figure out what they’re taking. It’s not as big a deal as drug decriminalization or sex work decriminalization, which have also proved effective in curbing opioid epidemics, but it’s something, she says. On the scientific side, the NIH’s Helping to End Addiction Long-term (HEAL) Initiative is looking at addiction from all angles. This includes attempting to create an opioid vaccine at the National Institute of Allergy and Infectious Diseases, developing new treatments for opioid use disorder at the National Institute on Drug Abuse and studying ways to pinpoint the cause of chronic pain that now requires opioid pain control. Already, some data are emerging. For instance, a 2022 study found that people who received buprenorphineassisted opioid treatment while in jail had a 32% lower rate of reincarceration, court charges and probation violations. “There’s been a real sea change, which is positive,” Strathdee says.
THERE IS ALSO SOME GOOD NEWS ON THE horizon for communities impacted by the HIV and opioid epidemics. In West Virginia, a judge recently stopped the implementation of the state’s restrictive syringe exchange law. In Florida, the Miami-based IDEA Exchange, which offers syringe services and medical care, expanded to serve statewide. And in Scott County, Hall is now the president of the board of Holding Space Recovery Project, a nonprofit community group born out of the closure of the county’s syringe exchange program and run by Kelly Hans, who’d helmed the county program. Hans works with the recovery center THRIVE as well as with Hall’s boss, the family medicine doctor William Cooke, MD, who first identified the county’s HIV outbreak. Holding Space has received the support of the Austin City Council to open a multidisciplinary center to serve people who inject drugs. It will offer harm reduction services, primary and gynecological care, food and clothing and screening for HIV, hepatitis C and other sexually transmitted infections. Hall will be there once or twice a week to run peer support groups. If people test positive for HIV, Hall and Foundations Family Medicine will link them to care. If they are negative, they can get connected to PrEP. Right now, the team is hoping for council approval to reinstate syringe services, says Cooke. And it won’t be a moment too soon. Cooke says he’s already seen an uptick in soft tissue infections—deep infections from injecting with reused syringes, spinal infections and even sepsis—all early warning signs that people are reusing needles again. One syringe containing HIV is all it would take to spark another outbreak. Cooke and Hall—whom Cooke has treated since she was a cheerleader in high school—have spent hours at city council and public health meetings arguing for these evidence-based approaches. “People can only make healthy choices from the options that are available to them,” Cooke says. “Unfortunately, a sterile syringe is not something that people have a choice to use right now. So hopefully, in the next few months, the new syringe service program will open.” For Hall, getting HIV wasn’t a blessing—she wouldn’t say that. But it has opened the door to a new life. Today, she is remarried. Her oldest child, who was just months old when she received her HIV diagnosis, is now 7 years old. “It has changed my life completely,” she says of her collaboration with Cooke and working with other people living with HIV. “The most fulfilling work to me is watching someone who is completely devastated—economically devastated, emotionally devastated—come completely out of that devastation and become a normal person,” Hall says. “When you help someone along this process and see their families come together and see them become a totally different person—it just makes you want to keep going and not stop,” she says. “So once they have gotten back on their feet and they are productive members of society, they get to pass that along to someone else. And that’s happening in Scott County right now.” ■
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HEROES BY LIZ HIGHLEYMAN
Steven Deeks, MD, was a young resident at the University of California San Francisco (UCSF) in the early 1990s when he saw his first patients with HIV. “I had these young gay men who were so motivated to learn about their health and get involved as activists,” he says. “We developed partnerships and friendships that led to me showing up at ACT UP Golden Gate meetings.” Deeks, now 59, took what was supposed to be a one-year job at UCSF’s Ward 86 HIV clinic; 30 years later, he’s still there. After years of treating people with HIV, spanning the era when effective antiretroviral treatment made it a chronic manageable condition, Deeks set his sights on the next frontier: a cure. The defining moment came in 2010 when someone came running into the clinic saying his next patient was Timothy Ray Brown—the first person cured of HIV. Deeks knew that a German doctor, Gero Hütter, had treated Brown’s leukemia with transplanted stem cells from a donor with a rare mutation that blocks HIV entry. Brown had stopped taking his antiretroviral therapy, but his viral load did not rebound. When Hütter presented the findings at the 2008 Conference on
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Retroviruses and Opportunistic Infections, the poster was tucked away in a back corner. “It was surrounded by AIDS activists but very few scientists,” Deeks recalls. By the time Brown got to San Francisco, he was a celebrity, and he was willing to work with Deeks’s team to learn more about his cure. Deeks directs UCSF’s long-running SCOPE cohort study, which investigates HIV disease progression and treatment response. He says he’s “more optimistic than ever” about long-term remission— a functional cure (see “The Long & Winding Road,” page 28). In March 2020, SCOPE was put on hold as researchers focused on a new pandemic. Today, there’s both an HIV cohort and a COVID-19 cohort. Deeks and his team are applying lessons learned from HIV to COVID research, including the long-term consequences of SARS-CoV-2 infection, dubbed long COVID. “Vaccines, PrEP [pre-exposure prophylaxis], antivirals—all the progress in COVID has been built on HIV investments for the past three decades,” he says. “We’re using the whole HIV playbook to figure out long COVID: Engage the community, get
people into cohorts, follow them, generate hypotheses and do early clinical trials to see what’s going on.” There are several hypotheses about what’s causing long COVID, including chronic inflammation, excessive coagulation, viral persistence, tissue damage, autoantibodies and reactivation of Epstein-Barr virus. “These have also all been implicated in why people with HIV, even on medications, still have health problems,” Deeks explains. But drumming up interest from the pharmaceutical industry has been a challenge. “We have been knocking on the doors of every single company with antibodies or antivirals. They said, ‘Interesting idea. Come back to us when you know how to measure long COVID.’ We’re still at that stage,” he says. Like HIV activists, long COVID advocates are pushing research forward and successfully lobbied for $1.2 billion in National Institutes of Health funding. “The HIV activist community was much smaller, mostly gay men, and they weren’t being listened to,” Deeks says. “But long COVID affects everybody. Now, people listen because of what HIV activists did.” ■
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CIMDUO
ATRIPLA *
EVOTAZ
tenofovir disoproxil fumarate + lamivudine
One tablet once a day. Each tablet contains 300 mg tenofovir disoproxil fumarate + 300 mg lamivudine. Take with or without food.
efavirenz + tenofovir disoproxil fumarate + emtricitabine
One tablet once a day. Each tablet contains 600 mg efavirenz + 300 mg tenofovir disoproxil fumarate + 200 mg emtricitabine. Take on an empty stomach. Dose should be taken at bedtime to minimize dizziness, drowsiness and impaired concentration.
atazanavir + cobicistat
One tablet once a day. Each tablet contains 300 mg atazanavir + 150 mg cobicistat. Take with food.
DESCOVY
KALETRA *
tenofovir alafenamide + emtricitabine
lopinavir + ritonavir
One tablet once a day. Each tablet contains 25 mg tenofovir alafenamide + 200 mg emtricitabine. Take with or without food.
Two tablets twice a day, or four tablets once a day, depending on HIV drug resistance. Each tablet contains 200 mg lopinavir + 50 mg ritonavir. Take with or without food.
BIKTARVY
bictegravir + tenofovir alafenamide + emtricitabine
cabotegravir + rilpivirine
A long-acting injectable regimen administered as two intramuscular injections every four weeks or eight weeks. A one-month lead-in period with Vocabria (cabotegravir) + Edurant (rilpivirine) pills is optional. Take with food.
COMPLERA Complete Regimens
rilpivirine + tenofovir disoproxil fumarate + emtricitabine
One tablet once a day. Each tablet contains 25 mg rilpivirine + 300 mg tenofovir disoproxil fumarate + 200 mg emtricitabine. Take with a meal.
DELSTRIGO
doravirine + tenofovir disoproxil fumarate + lamivudine
One tablet once a day. Each tablet contains 100 mg doravirine + 300 mg tenofovir disoproxil fumarate + 300 mg lamivudine. Take with or without food.
DOVATO
dolutegravir + lamivudine
One tablet once a day. Each tablet contains 50 mg dolutegravir + 300 mg lamivudine. Take with or without food.
emtricitabine (also known as FTC)
One 200 mg capsule once a day. Take with or without food.
PREZCOBIX
darunavir + cobicistat
One tablet once a day. Each tablet contains 800 mg darunavir + 150 mg cobicistat. Take with food.
EPIVIR *
lamivudine (also known as 3TC)
One 300 mg tablet once a day, or one 150 mg tablet twice a day. Take with or without food. Also approved for the treatment of hepatitis B virus but at a lower dose. People living with both viruses should use the HIV dose.
PREZISTA darunavir
One 800 mg tablet or two 400 mg tablets plus one 100 mg Norvir tablet once a day, or one 600 mg tablet plus one 100 mg Norvir tablet twice a day, depending on drug resistance. Take with food.
EPZICOM *
abacavir + lamivudine
One tablet once a day. Each tablet contains 600 mg abacavir + 300 mg lamivudine. Take with or without food. Should be used only by individuals who are HLA-B*5701 negative.
REYATAZ * atazanavir
Two 200 mg capsules once a day, or one 300 mg capsule plus one 100 mg Norvir tablet once a day. Take with food.
TEMIXYS
tenofovir disoproxil fumarate + lamivudine
One tablet once a day. Each tablet contains 300 mg tenofovir disoproxil fumarate + 300 mg lamivudine. Take with or without food.
ISENTRESS raltegravir
TRUVADA *
tenofovir disoproxil fumarate + emtricitabine One tablet once a day. Each tablet contains 300 mg tenofovir disoproxil fumarate + 200 mg emtricitabine. Take with or without food.
VIREAD *
tenofovir disoproxil fumarate
One 300 mg tablet once a day. Take with or without food.
Integrase Inhibitors
CABENUVA
EMTRIVA * Nucleoside/Nucleotide Reverse Transcriptase Inhibitors (NRTIs, or nukes)
One tablet once a day. Each tablet contains 50 mg bictegravir + 25 mg tenofovir alafenamide + 200 mg emtricitabine. Take with or without food.
(Pills not shown actual size)
Two 600 mg Isentress HD tablets (shown) once a day for those who are treatment naive or whose virus has been suppressed on an initial regimen of Isentress. One 400 mg Isentress tablet twice daily for people with HIV treatment experience. Take with or without food.
TIVICAY
dolutegravir
One 50 mg tablet once a day for those first starting ARV therapy or for those who have not used an integrase inhibitor in the past. One 50 mg tablet twice a day for people with treatment experience who have HIV that is resistant to other integrase inhibitors and when taken with certain ARVs. Take with or without food.
Integras
DOVATO
One tablet once a day. Each tablet contains 50 mg dolutegravir + 300 mg lamivudine. Take with or without food.
ODEFSEY
rilpivirine + tenofovir alafenamide + emtricitabine
One tablet once a day. Each tablet contains 25 mg rilpivirine + 25 mg tenofovir alafenamide + 200 mg emtricitabine. Take with a meal.
STRIBILD
elvitegravir + cobicistat + tenofovir disoproxil fumarate + emtricitabine
One tablet once a day. Each tablet contains 150 mg elvitegravir + 150 mg cobicistat + 300 mg tenofovir disoproxil fumarate + 200 mg emtricitabine. Take with food.
Non-Nucleoside Reverse Transcriptase Inhibitors (NNRTIs, or non-nukes)
One tablet once a day. Each tablet contains 50 mg dolutegravir + 25 mg rilpivirine. Take with a meal.
VOCABRIA
abacavir
cabotegravir
One 300 mg tablet twice a day, or two 300 mg tablets once a day. Take with or without food. Should be used only by individuals who are HLA-B*5701 negative.
One 30 mg tablet taken once a day with once-daily Edurant for a month as an optional lead-in regimen before switching to Cabenuva injections or for short-term treatment. Take with food.
EDURANT
NORVIR *
rilpivirine
One 25 mg tablet once a day. Take with food.
INTELENCE etravirine
One tablet once a day. Each tablet contains 800 mg darunavir + 150 mg cobicistat + 10 mg tenofovir alafenamide + 200 mg emtricitabine. Take with food.
TYBOST
cobicistat
PIFELTRO
These antiretroviral medications are rarely prescribed and no longer recommended:
doravirine
One 100 mg tablet once a day. Take with or without food.
APTIVUS tipranavir
COMBIVIR * SUSTIVA * efavirenz
One 600 mg tablet (shown) once a day, or three 200 mg capsules once a day. Take on an empty stomach or with a low-fat snack. Dose should be taken at bedtime to minimize dizziness, drowsiness and impaired concentration.
zidovudine + lamivudine
CRIXIVAN indinavir
FUZEON
enfuvirtide
INVIRASE
One tablet of either Symfi or Symfi Lo once a day. Each tablet of Symfi contains 600 mg efavirenz + 300 mg tenofovir disoproxil fumarate + 300 mg lamivudine. Each tablet of Symfi Lo (shown) contains 400 mg efavirenz + 300 mg tenofovir disoproxil fumarate + 300 mg lamivudine. Take on an empty stomach. Dose should be taken at bedtime to minimize dizziness, drowsiness and impaired concentration.
darunavir + cobicistat + tenofovir alafenamide + emtricitabine
Norvir is usually taken to boost the levels of other ARVs in the blood. Take with food.
One 150 mg tablet once a day in combination with ARVs that require boosting. Used only to boost other drugs. Take with food.
efavirenz + tenofovir disoproxil fumarate + lamivudine
SYMTUZA
ritonavir
One 200 mg tablet twice a day. Take with food.
SYMFI AND SYMFI LO
saquinavir
RUKOBIA
fostemsavir
One 600 mg tablet twice a day for people with HIV treatment experience. Take with or without food.
Entry Inhibitors
Complete Regimens
One tablet once a day. Each tablet contains 150 mg elvitegravir + 150 mg cobicistat + 10 mg tenofovir alafenamide + 200 mg emtricitabine. Take with food.
dolutegravir + rilpivirine
ZIAGEN *
PK Boosters
elvitegravir + cobicistat + tenofovir alafenamide + emtricitabine
JULUCA
One 300 mg tablet once a day. Take with or without food.
tenofovir disoproxil fumarate
GENVOYA
dolutegravir
One 50 mg tablet once a day for those first starting ARV therapy or for those who have not used an integrase inhibitor in the past. One 50 mg tablet twice a day for people with treatment experience who have HIV that is resistant to other integrase inhibitors and when taken with certain ARVs. Take with or without food.
VIREAD *
dolutegravir + lamivudine
TIVICAY
LEXIVA
fosamprenavir
RETROVIR *
zidovudine (AZT)
TRIZIVIR
abacavir + zidovudine + lamivudine
SELZENTRY maraviroc
One 150 mg, 300 mg (shown) or 600 mg tablet twice a day, depending on other meds used, for people with HIV treatment experience. Take with or without food.
VIRACEPT nelfinavir
VIRAMUNE nevirapine
ZERIT
stavudine
TRIUMEQ
dolutegravir + abacavir + lamivudine
One tablet once a day. Each tablet contains 50 mg dolutegravir + 600 mg abacavir + 300 mg lamivudine. Take with or without food. Should be used only by individuals who are HLA-B*5701 negative.
TROGARZO ibalizumab
A long-acting injectable administered intravenously as a single loading dose of 2,000 mg followed by a maintenance dose of 800 mg every two weeks for people with HIV treatment experience.
Visit poz.com/drugchart-prep for a list of ARV options for the prevention of HIV.
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