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Lifetime Survivors People born with HIV reclaim their experiences
Porchia Dees
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CONTENTS
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POZ.COM POZ BLOGS Our roster of bloggers spans the diversity of the HIV community. Go to poz.com/blogs to read varying points of view from people living with the virus as well as from HIV-negative advocates. Join the conversation in the comments section. Visit the blogs to find hope and inspiration from others.
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POZ OPINIONS Advocates, researchers, politicians, thought leaders and folks just like you all have ideas worth sharing. Go to poz.com/ opinions to read about topics such as living with HIV, improving care and treatment, increasing prevention efforts and fighting for social justice.
Gary Paul Wright (right) with his husband, Peter Oates
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22 WE ARE LIFETIME SURVIVORS People born with HIV are reclaiming their experiences—and giving themselves a new name. BY ALICIA GREEN 28 DOXYPEP 101 Taking an antibiotic after sex can help prevent sexually transmitted infections. BY LIZ HIGHLEYMAN 3 FROM THE EDITOR
14 SPOTLIGHT
Once in a Lifetime
RIAA & MSF Galas 2023
4 POZ Q&A
16 NUTRITION & FITNESS
Georgia Arnold, the former executive director of the MTV Staying Alive Foundation, shares her insights.
17 BASICS
Potato tomato frittata • eat for fuel Chlamydia
6 POZ PLANET
Iris House at 30 • Glenn Burke AIDS story to hit the screen • private HIV and AIDS funding drops • food pantries help HIV clients • R.I.P. Ronnie Grace, LGBTQ and HIV advocate • woman with HIV sues rehab center • POZ Stories: Tim B. • Everyday: Milestones in the HIV epidemic
18 CARE & TREATMENT Weight-loss drugs for people with HIV • expanding PrEP coverage • HIV gene therapy looks safe, but does it work? • hepatitis C care for the vulnerable
20 RESEARCH NOTES
10 VOICES
PrEP for trans women • Rukobia at five years • delayed HIV rebound • anal cancer
POZ managing editor Jennifer Morton sews HIV stories from the magazine for the AIDS Quilt • life is fabulous for Charles Sanchez
Gary Paul Wright is a longtime AIDS advocate.
32 HEROES
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. 273 POSTMASTER: Send address changes to POZ/Smart + Strong, 157 Columbus Avenue, Suite 525, New York, NY 10023. Copyright © 2024 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.
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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.
FROM THE EDITOR
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TESTED HIV POSITIVE IN 1992 the day after my 22nd birthday. For decades, I didn’t feel comfortable describing myself as a long-term survivor. In my mind, that term was reserved for those who got the virus in the ’80s. As I got older and more people living with HIV were thankfully aging with the virus, I finally was OK identifying as a longterm survivor. Now, having lived with the virus for over 30 years, it just seems plainly obvious to use that phrase. Words matter. They’re also often not as straightforward as they may seem. While the phrase “long-term survivor” fits many of us, the expansion of its use as a catch-all can obscure important differences. Case in point: adults who were born with HIV. There are about 10,000 of them in the United States. That number may not be large, but they do represent a significant segment of those living with HIV, and they share an experience those of us not born with the virus can’t truly comprehend. For example, I was indeed a young adult who tested HIV positive, but I didn’t have to go through childhood and my teenage years living with the virus during the worst of the AIDS era, most likely with health concerns and at least one parent lost to the epidemic. What we can do, however, is offer our support. To that end, our cover story focuses on adults born with HIV. The pages of POZ have spotlighted their stories over the years, but this moment is particularly special. During the most recent United States Conference on HIV/AIDS, nearly two dozen adults born with HIV took to the stage, the largest group of them ever to gather at once. Our cover subject, Porchia Dees, was one of them. She and her colleagues declared that their voices needed to be heard. They told the attendees that from then on they wanted to be called lifetime survivors to underscore their experiences living their entire lives with the virus. Their alternate group name is dandelions, in honor of a poem of
the same name written by the late lifetime survivor Mary Bowman. Go to page 22 for more. In this special issue focusing on African Americans, we highlight Black advocates such as Porchia and related topics. For example, go to page 6 to read about Iris House marking its 30th anniversary; you’ll also learn how Jamie Lee Curtis is planning to make a movie about Glenn Burke, the late baseball player lost to AIDS credited with inventing the high five; and you’ll say goodbye to LGBTQ and HIV advocate Ronnie Grace; and much more. Gary Paul Wright is another excellent advocate. As the current executive director of the African American Office of Gay Concerns, he cofounded the organization in 2001 “to ensure men of color have a voice in the fight against HIV/AIDS.” Go to page 32 to learn more. To read what you need to know about taking the antibiotic doxycycline as post-exposure prophylaxis after sex to prevent chlamydia, gonorrhea and syphilis, go to page 28.
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 JANUARY/FEBRUARY 2024 POZ 3
POZ Q & A BY SHAWN DECKER
Screenshots from MTV Shuga
OPENING CONVERSATIONS
A
LOT OF THINGS—FROM DELIGHT TO DEBAUCHERY—COME to mind when we think about MTV. But here’s why you should make a little room in that headspace for the MTV Staying Alive Foundation. Paramount Global’s nonprofit has been educating young people about HIV and sexual health for over two decades through grants, partnerships and the dramatic television series MTV Shuga. MTV Staying Alive has helped transform how young audiences perceive HIV and the complicated realities of sexual health. A World Bank evaluation—coauthored by Nobel Prize–winning economist Abhijit Banerjee—estimated that every $1 invested in the use of Shuga as an educational tool yielded a health return of $150. Even MTV’s Butt-Head could recognize how awesome that is. Georgia Arnold, who cofounded MTV Staying Alive with Bill Roedy in 1998 and served as its executive director for 25 years, shares her insights on how it all came about.
Not being starstruck by the entity probably gave you a better vantage point to help maximize its reach, particularly where youth and sexual health intersect.
When I started out on this journey, I didn’t have the strongest vision of what MTV Staying Alive could achieve. But I felt that if we could use the brand and add their star power to the mix of powerful messages, we could make a real difference. I did manage to persuade some very fabulous first funders in the World Bank, UNAIDS, UNICEF, the Kaiser Family Foundation and FHI 360. At the start, it was very much the MTV brand that hooked the funders.
As an American Gen Xer, I hold MTV in a very special place in my heart. Through a child’s eyes, I saw a woman with short hair in a suit (Annie Lennox in “Sweet Dreams”) and a man in drag (Dee Snyder of Twisted Sister) for the first time. Most important, as a teen with HIV, Pedro Zamora’s appearance on The Real World: San Francisco was life-changing. Your work with MTV has been on the other side of the remote. What was your first impression of the network?
Thank goodness they were starstruck by the brand! When I think of MTV Staying Alive, I think of MTV Shuga, which is basically the best show ever created that deals with HIV on the regular. Tell us more about it.
I didn’t really have any impressions at all of MTV growing up in London. It didn’t launch outside the United States until 1987, six years after the U.S. launch. I was off to university, where cable TV didn’t exist. To be honest, when I walked into MTV to temp for two days in 1993, I had no idea what I was letting myself in for. What’s funny is that music wasn’t in my DNA. I was an MTV innocent.
MTV Staying Alive has been producing MTV Shuga since 2009. The first series, set in Nairobi, starred the then-unknown actress Lupita Nyong’o. If you’ve never seen it, think Netflix’s Sex Education but much more 360. Alongside the TV
4 POZ JANUARY/FEBRUARY 2024 poz.com
MTVSHUGA.COM
The former executive director of the MTV Staying Alive Foundation shares her insights.
show, there’s a full digital campaign, radio series, comic books and community education led by young people going into schools. Some of our most impactful work is when we take the glamorous side of our work off-screen and into the communities. You can go into a school in a rural area of South Africa and watch these kids who’ve been trained by MT V Staying Alive using Shuga content to open conversations about sex. Too often these conversations are painful, as a young person will open up about the violence in their life. But our trained young people are able to handle these conversations not just with care but to connect them to specialists to support them. The way that MTV Shuga presents characters living with HIV is unlike anything I’ve ever seen in scripted TV. It’s consistent, it’s realistic and I think young people connect to the show because it’s also a fun watch.
Exactly! The realism is baked into the design of the series. Before one word of a new series is written, there’s an extensive amount of formative research. The writers sit with young people from the community that we’re filming in to understand their day-to-day lives, which in turn ensures that the audience recognize Shuga’s stories as their own. As an example, before we started scripting for MTV Shuga Down South [set in South Africa], I was in a school in the Western Cape where a young girl told me that “someone has to die” in the new series. When I asked her why, she said, “Well, you said that MTV Shuga reflects our lives...and in our lives, someone always dies.”
COURTESY OF GEORGIA ARNOLD
How did you handle that suggestion?
Spoiler alert: One of our lead characters in that series did die as a consequence of this conversation. Messaging has expanded since MTV Staying Alive started. Back then, we were focused only on HIV prevention. Treatment options were limited. Now, we can talk about self-testing for HIV, PEP [post-exposure prophylaxis] and PrEP [pre-exposure prophylaxis]. Soon,
hopefully, we can talk about vaginal rings, injectables and all the amazing innovations that are coming out all the time. Today, you’re as likely to see messaging about LGBTQ people, safe and legal abortions, reproductive health, mental health and substance abuse as you are about HIV. It’s all so intertwined, which is so effective. What was the toughest part about being executive director of MTV Staying Alive?
Being told no by a potential funder was always difficult, but that was often balanced out by being told yes by someone else. Then came the fun part of actually making the program itself. I loved being the executive director of MTV Staying Alive. I’ve met everyone from presidents to prime ministers to royalty, both “real” and celebrity. But the reality is that the pop stars and the rock stars were never all that. Thanks to
Georgia Arnold
Gwenn about your magnetic relationship [when one person has HIV and the other doesn’t] that inspired us to write a similar storyline for MTV Shuga Naija [set in Lagos], so thanks for not only inspiring us back then but for continuing to do so. Some of the biggest hurdles for people with HIV are dating and relationships. Seeing Pedro and his partner, Sean Sasser, on MTV laughing together and just being in love, that gave me hope at a time when I wasn’t open about my HIV-positive status. During your time at Staying Alive, you truly gave people with HIV a voice as well as a seat at the educational table. Thank you so much for that! Any last thoughts?
Stepping down from MT V Staying Alive was something that I spent a lot of time thinking about. It was a conscious decision to lean into the feminist-led conversation about decolonizing global
“The realism is baked into the design of the series.”
MTV Staying Alive, I met the most incredible “normal” people whose work is all about how to better the square mile of their own community. Some years back, you overtook Depeche Mode as my favorite British rock stars. I thought it would be weird to tell you that in person or in an email, so I’m using a magazine interview to make it less awkward.
You’re my MTV rock star, Shawn! It was because you and [your wife] Gwenn agreed to be in the second Staying Alive documentary in 2000 that we became friends and colleagues. It was a conversation with you and
health. We now have the amazing Wame Jallow as the foundation’s new executive director, running it from Gaborone, Botswana. While people have said that it’ll be tough to “step into your shoes,” my response is that Wame has differentsized feet to mine and different taste in footwear, so I can’t wait to see what journey she and MTV Staying Alive go on together. I’ll be watching proudly from the sidelines, with love. Q Shawn Decker is a long-term HIV survivor and a POZ contributing writer. Please go to poz.com/blogger/shawn-decker for more.
poz.com JANUARY/FEBRUARY 2024 POZ 5
POZ PLANET UPDATES ON HIV & AIDS
Glenn Burke AIDS Story to Hit the Screen
Iris House at 30 The HIV group recently added a new location. Iris House On October 19, Iris House, an HIV organization for recently women and families, celebrated 30 years of service opened in with a party honoring its staff, supporters, state New Jersey. officials and others. Founded in 1992, Iris House, named after AIDS activist, writer and performer Iris De La Cruz, provides comprehensive support, prevention and education services for women, families and underserved communities affected by HIV and AIDS. The event featured food, cocktails, music and the screening of a short film highlighting the agency’s 30 years serving the greater New York/New Jersey area. Iris House executive director Ingrid Floyd presented awards to Mindy Fullilove, MD; Robert Fullilove, EdD; and Assemblywoman Inez Dickens for their longtime commitment to people living with HIV, substance use disorders and mental health issues in vulnerable New York City communities. Floyd thanked everyone at the event for their lasting support, which has allowed Iris House to provide lifesaving care to thousands of people over the years. At a time when other agencies are closing their doors, Iris House recently opened a new location in Plainfield, New Jersey, she noted. Floyd said the agency hopes to continue to connect with young people at risk for HIV through outreach and engagement in schools and churches in New York and New Jersey. “In our work in New Jersey, we have a particular focus on youth and young adults, which we will be able to expand on at this new site in addition to continuing our services to and for women living with HIV,” Floyd said in a press release. Iris House prides itself on creating a safe space for women living with HIV to get support and advice from their peers. Its Love Your Life/Ama Tu Vida virtual group, for example, enables women living with HIV across the country to discuss treatment, relationships, stigma, mental health, empowerment and other topics with one another. —Laura Schmidt
6 POZ JANUARY/FEBRUARY 2024 poz.com
Jamie Lee Curtis, who won an Oscar last year for her role in Everything Everywhere All at Once, recently graced the cover of the national LGBTQ publication The Advocate for a profile titled “A Mother’s Nature: Jamie Lee Curtis Is Our Advocate of the Year.” The obvious reason for the accolade is that Curtis, 64, has been a vocal champion of her trans daughter, Ruby, and the transgender community. But read the interview and you’ll learn that Curtis has long supported the HIV and LGBTQ communities. In fact, Curtis—the daughter of famed actors Janet Leigh (Psycho) and Tony Curtis (Some Like It Hot) and a film icon in her own right for roles in Halloween, Freaky Friday and other hits—is developing an AIDS-related film project. When the Advocate’s John Casey asked Curtis which queer people have impacted her, she first mentioned tennis great Billie Jean King, who “told her truth in a hurricane, and that takes guts.” Then Curtis added: “There’s someone I didn’t know, but who has been with me in spirit for the last 12 years or so. I’ve been attempting to tell the story of Glenn Burke who invented the High Five and began his baseball career playing for the Los Angeles Dodgers in the 1970s.… “He was a Black, closeted gay L.A. Dodger and was traded to the Oakland A’s, and ultimately kicked out of baseball for being gay and ended up dying of HIV/AIDS in Oakland. “I read the first book about him, Out at Home, by [Burke and] Erik Sherman, and bought the rights to the book. It’s been an incredibly long journey, but I started working Glenn Burke with [Hollywood producer] (right) and Ryan Murphy and we just Jamie Lee moved the project from Curtis Netflix to Disney before the strike, and Ryan and I are excited about getting the project up and going.” —Trent Straube
(IRIS HOUSE) FACEBOOK/IRIS HOUSE; (CURTIS) TINSELTOWN/SHUTTERSTOCK.COM
Jamie Lee Curtis and Ryan Murphy are behind the film.
PRIVATE HIV AND AIDS FUNDING DROPS The $9 million dip “raises red flags.” Global philanthropic funding in the form of private grants to fight the HIV epidemic dipped $9 million to $692 million between 2020 and 2021, according to the latest annual report from Funders Concerned About AIDS (FCAA). Although the drop represents a 1% decline in funding, the report authors say it “raises red flags” because “waning support for HIV is not an anomaly…private philanthropic resources for HIV have shown a slow and steady decline in recent years.” The 2023 report on 2021 data marks the 20th edition of “Philanthropic Support to Address HIV and AIDS,” and it covers a year that commemorated the 40th anniversary of what’s generally considered the start of the epidemic: June 1981, when the Centers for Disease Control and Prevention published its first article about the disease that came to be known as AIDS. The report includes information on more than 5,000 grants disbursed by 187 funders and awarded to 2,800 grantee organizations. As such, it offers a snapshot of the philanthropic
response to the epidemic. In breaking down the data, the report offers a look at the top funders, where the grants are going and how the money is being used (for example, to promote pre-exposure prophylaxis, or PrEP, to prevent HIV, or to invest in research or administrative costs). The top five funders of 2021 were Gilead Sciences, the Bill & Melinda Gates Foundation, Viiv Healthcare, Silicon Valley Community Foundation and Wellcome Trust. The top two funders—Gilead and Gates—represented 66% of the global philanthropic resources. “It is unconscionable that we know how to end the AIDS epidemic but lack the political will and financial investment to do so,” said FCAA executive director Masen Davis in the press release. “It’s time for the public, policymakers and philanthropy to think seriously about what’s at stake. The most vulnerable people around the world are being left behind, and we have the chance to stop it, but the window is narrowing. We must take action now.” —TS
Food Pantries Help HIV Clients
(2021 REPORT) COURTESY OF FCAA; (BOX OF FOOD) ISTOCK
“Without food…people don’t take their medicine.” Vivent Health, an HIV care provider with locations across four states, says its clinics in Denver and Kansas City have reported an increased demand at their food pantries—and that meeting that need is an important factor in helping people with HIV reach and maintain undetectable viral loads. People living with HIV who take meds regularly and maintain viral suppression enjoy better overall health, experience slower disease progression and are less likely to develop opportunistic illnesses. What’s more, people with an undetectable viral load don’t transmit HIV to others through sex, a fact referred to as treatment as prevention, or Undetectable Equals Untransmittable (U=U). What’s that got to do with food pantries? As Lyssa Towl, vice president of operations at Vivent’s Denver location, explains it to 5280.com: “Without food…people don’t take their medicine.” As food prices have spiked due to inflation and while many HIV clients face economic hardships, it has become increasingly important for Vivent
to provide robust and nutritious options to its clients. In Kansas City, for example, Vivent Health staff told KSHB.com that demand at the food pantry has grown by 30%. “The numbers each month, each week, are on the increase,” said Caroline Huffman, vice president of operations for Vivent Health Kansas City. Based in Wisconsin, Vivent Health also operates clinics in Colorado, Missouri and Texas. As one of the largest HIV providers in the nation, Vivent offers wraparound services, including dental care, pharmacies, case management, mental health care and the aforementioned food pantries. “We believe food is medicine,” said Nicholas Clark, Kansas City’s food pantry coordinator. “You have the power to heal with food.” Proof of that is in the data from Denver, especially when put in a larger context.
Nationwide, 66% of people with diagnosed HIV were undetectable in 2021, according to the Centers for Disease Control and Prevention. In Colorado, the number is 61%. But at Denver’s Vivent Health, 96% of clients maintain an undetectable viral load. —TS
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POZ PLANET UPDATES ON HIV & AIDS
R.I.P. Ronnie Grace, LGBTQ & HIV Advocate “Uncle Ronnie” was a peer navigator at Diverse & Resilient. Ronnie Grace, an HIV advocate affectionately known as Uncle Ronnie to many in Milwaukee’s Black and brown LGBTQ communities, died November 9, 2023, after a battle with liver cancer, reports the Milwaukee Journal Sentinel. Grace was “a cherished member” and “an integral part” of Diverse & Resilient, a community health organization that serves LGBTQ folks in Wisconsin. A memorial to Grace posted on DiverseandResilient.org reads in part: “Ronnie’s journey with Diverse & Resilient began in 2006 as a program participant, and his dedication and passion led him to become a crucial member of our team. Ronnie joined Diverse & Resilient in 2012 as a coordinator for the HIV testing program. His Ronnie exceptional contributions quickly elevated him Grace to lead coordinator for both the HIV and STI [sexually transmitted infection] testing programs. In addition, Ronnie facilitated the agency’s support group for women of trans experience, Sisters Helping Each Other Battle Adversity (SHEBA). “In 2020, Ronnie took on the role of lead Peer Navigator for the agency’s HIV Peer Navigator Program, further showcasing
his commitment to serving the LGBTQ and HIV communities. Throughout his tenure, Ronnie garnered numerous awards for his tireless work, participating in HIV and LGBTQ anti-stigma campaigns and serving on various boards, including the Wisconsin HIV and HCV [hepatitis C virus] Statewide Action Planning Group (SAPG) and the City of Milwaukee Commission on Domestic Violence Sexual and Assault (DVSA). “Ronnie’s impact extended beyond professional achievements. He founded and facilitated GROWN UPS, an empowerment and support group for men living with HIV, demonstrating his dedication to creating safe spaces for the underserved and underprivileged LGBTQ and HIVaffected communities of color.” According to the Sentinel, Grace was born in Mississippi and grew up in Milwaukee, where his family moved during the Great Migration. He was also a ballroom dancer who worked in Hollywood, New York City and Atlanta. When HIV hampered his health, Grace returned to Milwaukee and became active in the LGBTQ and HIV communities. Recently, he sought treatment for Stage IV liver and bile cancer at MD Anderson Cancer Center in Houston, where he died. —Trenton Straube
Woman With HIV Sues Rehab Center A woman living with HIV sued an assisted living and treatment center in Arizona, alleging that the center disclosed her HIV-positive status to other residents and told them they would not be safe around her. Then she was removed from the center, according to the lawsuit. In October 2023, Hailei Joe filed a federal lawsuit against Olive Branch Assisted Living, a residential addiction treatment facility in Casa Grande, Arizona. The complaint alleges that the facility violated the federal Fair Housing Act, the Arizona Fair Housing Act and the Americans with Disabilities Act. “I’m Native American,” Joe told the Phoenix New Times. “My grandmother refers to us as the grassroots people because we are at the bottom of society, but I never thought in a million years that this would happen to me.” Joe alleges that when she moved
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into the assisted living center in October 2022, she told a staff member that she thought she might be HIV positive. In November 2022, test results confirmed she had the virus. Olive Branch owner Russell Appleton subsequently banned Joe from a field trip and activities that involved other residents, according to the court documents. The lawsuit states that Appleton then called a group meeting during which he informed all treatment center residents that they had the right to know that someone living at the facility was HIV positive and that the facility was no longer safe for them. Although he did not mention Joe by name, she began crying, and other residents attempted to comfort her. After Appleton disclosed her status without her permission, Joe alleges that she was forced to leave the facility, cutting off her access to its addiction
treatment services. Joe filed the lawsuit because she says the eviction caused her to experience unstable housing and emotional distress. She also claims the facility violated her privacy by disclosing her HIV status to others. She is seeking a jury trial as well as punitive damages. —Laura Schmidt
(GRACE) FACEBOOK/RONNIE GRACE (ORCHID, FRAME AND LEGAL IMAGE) ISTOCK
She alleges the facility disclosed her status and then evicted her.
WHAT MADE ME SURVIVE?
(TIM B.) COURTESY OF TIM B.; (MAKGATHO MANDELA) WIKIMEDIA; (PLAYBILL) PLAYBILL.COM; (SUPREME COURT AND GRAND CENTRAL STATION) ISTOCK
Tim B. asks the question many other long-term survivors have asked. It has been a little over 40 years since the first cases of HIV were reported. Back then, it didn’t have a name. I was diagnosed with HIV in 1995, and I really can’t believe that I am still alive today. It was the summer of ’95. New York City was very hot, and it was a few months after my boyfriend had passed away from AIDS that I went for a test at a local clinic. I assumed that I was fine because I had never had any HIV-related illnesses, nor did I have any of the purple spots (Kaposi sarcoma) on my body that my boyfriend had. I needed to take an HIV test to ease my mind, to give me comfort, but it didn’t. The test result came back positive. My boyfriend (Carlos) and I had always practiced safe sex. He was diagnosed in 1993, but it was 1994 that
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was his (and my) hardest year. He got sicker and sicker throughout the year. Carlos’s illnesses started with Kaposi sarcoma, then his energy levels went way down and then he was hospitalized numerous times for various illnesses. I couldn’t even begin to count the exact number of days he was in the hospital. I spent New Year’s Eve 1994 by his bedside in the hospital, which was conveniently around the corner from our apartment in NYC’s Greenwich Village. Carlos would be dead three months later, dying on Academy Awards night in March 1995. It was the night that Forrest Gump won Best Picture, a movie about a man with longevity, which was ironic because my boyfriend didn’t have any. Carlos was only 30 when he passed away, surrounded by me, a couple of friends and his home nurse. When I got my diagnosis, I was in a state of shock. My body felt so heavy. Some days I just couldn’t move. I struggled to go to work and struggled even more to maintain contact with friends. It was even worse when I found out my CD4 count and viral load. My CD4 count was in the double digits, and my viral load was very high. If being diagnosed with HIV shocked me, knowing that my numbers were so low and so bad was even worse. I asked my doctor how much time I had left. With my numbers that bad and the lack of effective HIV medications at that time,
What three adjectives describe you? Determined, positive, full of life. What is your greatest regret? Not being able to spend more time with those people who succumbed to HIV at such a young age. What is the best advice you ever received? Live everyday like it is your last. Read other POZ Stories or share your own at poz.com/stories.
These dates represent milestones in the HIV epidemic. Visit poz.com/aidsiseveryday to learn more about the history of HIV and AIDS. BY JENNIFER MORTON
NELSON MANDELA announces that his son, MAKGATHO, has died of AIDS-related causes. (2005)
THE U.S. SUPREME COURT refuses to hear an appeal that challenges a lower court’s ruling permitting Alabama prisons to segregate inmates living with HIV. (2000)
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During rush hour, ACT UP members unfurl banners in Grand Central Station in New York City that read: “Money for AIDS, Not for War” and “One AIDS Death Every 8 Minutes,” as part of citywide protests known as a DAY OF DESPERATION. (1991)
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I figured I would be dead in a Tim B. year. But by some miracle, cocktail combination therapy became available. I have continued to take various combinations of drugs since then. Sure, I’ve had a few health scares— in 1999, I had a fever for two months, and no one could figure out what it was until, luckily, it quietly went away—but for the past 26 years, my health has been robust and HIV-illness free. What made me survive HIV? The cocktail combination of HIV drugs have had something to do with it. But I also think that I want to continue living for Carlos and for all those friends (and two of my cousins) I lost in the 1980s and 1990s to the once deadly disease. HIV has not taken me, and I won’t let it.
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NATIONAL BLACK HIV/AIDS AWARENESS DAY
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Terrence McNally’s LOVE! VALOUR! COMPASSION! opens on Broadway. The play revolves around eight gay men who gather at a farmhouse in New York for three summer weekends during the AIDS crisis. A 1997 film adaptation reunited most of the original cast. (1995)
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HIV IS NOT A CRIME AWARENESS DAY
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VOICES BLOGS AND OPINIONS FROM POZ.COM
SEWING HIV STORIES In a blog post titled “Sewing Stories Together,” POZ managing editor Jennifer Morton writes about how she ended up making a POZ memorial panel for the AIDS Memorial Quilt. Below is an edited excerpt.
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of AIDS-related causes. It was first displayed on the National Mall in Washington, DC, on October 11, 1987, as part of the National March on Washington for Lesbian and Gay Rights. Today, the Quilt continues to be displayed around the world, helping educate people about HIV and the continued impact of the epidemic. Launched in 2022, the Change the Pattern initiative focuses on displaying sections of the Quilt in communities in the South, where HIV disproportionately impacts people of color. While working for POZ, I’ve been fortunate to see a number of Quilt displays over the years, including a large display on the National Mall in Washington, DC, during the 2012 International AIDS Conference. The Quilt is a powerful tool for advocacy and education. The stories of the people represented in the Quilt remind us of the many others lost in the four decades since the first cases of HIV were reported. And although some people in the United States today are still dying of AIDS-related causes, most people with HIV are not thanks to effective antiretroviral treatment. The POZ panel for the Quilt was designed using POZ magazine covers featuring people with HIV who have passed away. Some of these individuals
died directly of AIDS-related causes, and some did not. But they each have a unique story that deserves to be remembered. Anyone can make and submit a Quilt panel. I was lucky to have an amazing volunteer from Mizell (thanks, Kate!) help me turn my vision into a reality, but you don’t have to be an artist or a sewing expert to create a tribute to a loved one. Explore the AIDS Memorial Quilt and get inspired! The entire Quilt and each panel can be viewed online, and it can be searched by name. QUILT FACTS • The Quilt was conceived by Cleve Jones in 1985. • The Quilt was first displayed on the National Mall in Washington, DC, on October 11, 1987. • The Quilt includes panels from every U.S. state and 28 countries. • Each Quilt panel is 3 feet by 6 feet, representing the size of a grave. • If you spent 30 seconds viewing each panel, it would take 17 days to view the entire Quilt. • Materials in the Quilt include badges, Barbie dolls, buttons, car keys, condoms, corsets, feather boas, gloves, hats, jeans, vinyl records, wedding rings and more! Q
JENNIFER MORTON
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APPRECIATE THE SKILL AND patience that goes into making a quilt. My mom loved to make quilts and proudly wore a sweatshirt that read: “Quilters Always Come With Strings Attached.” I also appreciate the love and devotion that go into each panel of the AIDS Memorial Quilt. Today, the Quilt consists of more than 50,000 individual panels and features more than 110,000 names. Weighing in at 54 tons, it’s the largest community art project in the world. In November 2023, the Mizell Center in Palm Springs, California, displayed sections of the AIDS Memorial Quilt— including new panels created by local community organizations—for a special exhibit. The event featured a panel discussion during which participants reflected on the history of HIV and explored the origins and evolution of the Quilt. As one of the exhibit’s community partners, POZ was also encouraged to contribute a panel. I’d never considered making a panel before, but given my deep appreciation for quilting—and the Quilt—it didn’t take long for me to decide it was something I absolutely wanted to do. Conceived by Cleve Jones in 1985, the Quilt was founded as a memorial to celebrate the lives of people who died
Join us and put people first in the HIV response! AIDS 2024, the 25th International AIDS Conference, will take place in Munich, Germany, and virtually from 22 to 26 July 2024.
Join the world’s largest conference on HIV and AIDS.
Register now at aids2024.org
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VOICES BLOGS AND OPINIONS FROM POZ.COM
LIFE IS FABULOUS
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HARLES SANCHEZ IS ONE busy New Yorker. There’s the writing he does for nearly all the major HIV outlets. Then there’s his regular Instagram show featuring community notables, and then there are his dashes to the gym to contend with the five pounds, give or take, that continue to mock him despite his high level of fitness. And, oh yes, on this day there is the proper costume to select. “I’ve picked out a feather boa,” he told me in advance of his one-man cabaret act with the breathlessness of Diana Nyad at the halfway point of the English Channel, “and now I’m looking at women’s glasses. I might wear a pair for one of my characters.” Those characters populated, through an evening of song, his show Life Is Fabulous! on Saturday, November 4, at the Laurie Beechman Theatre in New York City. We attempted to begin the interview, but the subjects of theater and BROADWAY! popped up for no particular reason. That’s a lie, there’s always a reason— usually for Charles to dish about the shows he has seen, wants to see, has heard rumors about or cannot forget. “Did you know I saw Starlight Express with the original Broadway cast, including Jane Krakowski and Andrea McArdle?”
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he asked, rhetorically, about the disastrous Andrew Lloyd Webber musical of the 1980s. “Everyone was on roller skates. It was ridiculous! It is unrevivable. They had so many injuries!” Though his own show was not as physically treacherous, it did require stamina. Charles performed a formidable assortment of songs written especially for him over the years by his friend and collaborator Joel B. New, the award-winning composer who wrote music for one of Charles’s first forays into video production many years ago, Manhattan Man Travels. Since then, Joel has featured Charles in many of his own original musical projects, while Charles called upon Joel to write the song “The More You Can Ho” for a video project that featured Merce, the character Charles created for his remarkable musical comedy web series of the same name about a gay New Yorker living with HIV. So Life Is Fabulous! was an encore of all that music, a celebration of a productive musical partnership and something else as well. “I’m not dead. That’s what we’re celebrating,” Charles said. “That’s basically it. Twenty years ago, who would have known I’d be doing a cabaret show with music written for me? Unbelievable!”
Indeed. It is particularly astonishing because 20 years ago, Charles awoke from a lengthy coma after being found unconscious in his apartment. One of the first things he was told after waking up was the reason for his serious medical emergency: He had AIDS. Since then, anniversaries of his diagnosis have come and gone, but this year, at the 20-year mark, Charles knew the time was right to put on a show, a dream he has had since he was 19 years old. Even so, he refused to allow the topic of HIV to upstage him. Only one song, “The More You Can Ho,” dealt directly with the virus. “We had AI write the press release for Life Is Fabulous! just to see what it would say,” Charles offered with typical transparency, “and it came back with all these over-the-top superlatives. And we just made it even more ridiculous. Why not? I mean, the thing says I’m ‘a beacon to many.’ A beacon of what? That’s the question.” On November 4, the stars aligned around Charles and the show he once thought unimaginable became a reality complete with a musical director with a Broadway pedigree, a small live band and a glamorous venue. “Not only will I do this concert,” Charles said mischievously, “I’m wearing sequins.” Q
COURTESY OF CHARLES SANCHEZ
In a blog post titled “For Charles Sanchez’s Cabaret Show, Life Is Fabulous at Long, Long Last,” POZ contributing writer Mark S. King shares in the commemoration of Sanchez’s 20th HIV anniversary. Below is an edited excerpt.
LET’S STOP HIV TOGETHER
“Hear this, HIV:
I’m going to take care of me so I can take care of those I love.
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“Staying in care and on treatment helps me to be the best mother, wife, and HIV prevention educator I can be. I tell other women living with HIV: You can overcome your fear. You deserve to live life to the fullest.” — ANGIE FROM LOGANVILLE, GEORGIA GET IN CARE, STAY IN CARE, LIVE WELL, AND LET’S SUPPORT OTHERS TO DO THE SAME.
cdc.gov/HIVTreatmentWorks
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SPOTLIGHT BY JOE MEJÍA
RIAA & MSF GALAS 2023 On October 19, the Treatment Action Group (TAG) honored some of the brightest scientists, activists and leaders in the fight to end HIV, tuberculosis (TB) and hepatitis C virus (HCV) at its annual Research in Action Awards (RIAA) in New York City. An offshoot of ACT UP, TAG formed in 1992 to speed up AIDS research, advocate for increased funding and ensure that people with HIV and at risk for the virus have access to treatment and prevention. In 2002, TAG expanded its mission to include the eradication of TB, which was affecting people with HIV in the developing world and remains a leading cause of death among children globally; soon thereafter, HCV became a target of its work as well. On October 14, the Matthew Shepard Foundation (MSF), which in 2023 commemorated its 25th year, held its annual gala in Denver. Started in 1998 by Judy and Dennis Shepard to honor their son Matthew after he was attacked for being gay and left to die at age 21, MSF advocates for the LGBTQ community on numerous fronts. In 2009, MSF helped pass the country’s first federal hate crimes legislation: the Matthew Shepard and James Byrd, Jr. Hate Crimes Prevention Act. The gala not only highlighted Judy and Dennis Shepard’s many accomplishments as LGBTQ advocates but also raised $568,000 to support critical programs and resources, while honoring Billy Porter, Chasten Buttigieg and Be a Friend, an organization of students who fight bullying.
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1. Guillermo Chacón, president of the Latino Commission on AIDS, was honored for his longtime service to the Latino community. On hand to present him with his RIAA was another Latino HIV hero, Jesús Aguais, of AID for AIDS. 2. Tamrin Goldberg, of the North American tour of Moulin Rouge! The Musical, emceed the event, held at the Angel Orensanz Foundation in Manhattan. 3. The Sentinel Project on Pediatric Drug-Resistant Tuberculosis was recognized for its efforts to center children in the global fight against TB. Lindsay McKenna and Mike Frick, codirectors of TAG’s TB Project, presented the RIAA to the Sentinel Project’s Mercedes Becerra, ScD (left), whose fellow honorees, colleagues Jennifer Furin, MD, PhD, and Soumya Swaminathan, MD, were unable to attend. 4. Asa Radix, MD, PhD (left), of the LGBTQ health center Callen-Lorde received his RIAA from colleague Peter Meacher, MD. Radix was honored for his work as a leading researcher of transgender and nonbinary health.
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5. Artist Ivy Kwan Arce (a 2022 RIAA honoree) donated a mixed-media artwork to be sold at the RIAA event. Titled Entre el Cielo y la Tierra (“Between Heaven and Earth”), the piece pays tribute to the pivotal cases and manifestos that revolutionized health care for people with AIDS. 6. Judy Shephard, Matthew Shepard’s mother, poses with award-winning actor Billy Porter, who received MSF’s 2023 Making a Difference award at the gala. 7. Chasten Buttigieg received the Dennis Dougherty Award for Community Leadership at the MSF gala. 8. Guests at the gala, held at the Sheraton Denver Downtown Hotel, enjoyed a silent and live auction, which featured custom teddy bears inspired by Chasten and Pete Buttigieg and Billy Porter as well as a pair of boots autographed by the original cast of Kinky Boots, which sold for $16,000!
Send your event photos to POZ at website@poz.com or tag us on Facebook, Instagram or Twitter. For a list of community events, visit poz.com/calendar.
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NUTRITION & FITNESS ADVICE ON DIET AND EXERCISE
EAT FOR FUEL, NOT FUN By Craig Ramsay Here are some slim-down tips:
POTATO TOMATO FRITTATA It’s a full meal all by itself. THIS FRITTATA IS FAST and easy. It’s a full meal all by itself, and it’s packed with many important nutrients. The cooked tomatoes burst with the antioxidant lycopene, the sautéed garlic brings anti-inflammatory allicin and the spuds add carbs for quick energy as well as a dose of vitamin C. SERVINGS: 4 / INGREDIENTS: 10 / PREP: 20 MINUTES
¾ teaspoon salt ½ teaspoon black pepper 4 garlic cloves, thinly sliced 3 tablespoons extra virgin olive oil
½ pound Yukon Gold potatoes, scrubbed and cut into ¼-inch dice 2 cups grape tomatoes or halved cherry tomatoes
DIRECTIONS 1. In a large bowl, whisk together whole eggs, egg whites, half the Parmesan cheese, basil, ½ teaspoon salt and ¼ teaspoon pepper. Preheat the broiler. 2. Heat 1 tablespoon olive oil in a 10-inch heavy skillet over medium heat. Add the garlic and cook, stirring until golden, about 1 minute. Using a slotted spoon, transfer the garlic to a bowl. Set aside. 3. Add potatoes to the skillet and sauté over medium-high heat, stirring until just tender, about 6 minutes. Transfer with a slotted spoon to the bowl containing the garlic. Set aside. 4. Add 1 tablespoon olive oil and tomatoes to the skillet and cook over medium-high heat, stirring until tomatoes brown and skins split, about 4 minutes. 5. Add the remaining tablespoon of olive oil and potatoes with garlic to the skillet, spreading evenly, and sprinkle with remaining salt and pepper (see “Chef Tips”). Pour the egg mixture over the vegetables and cook over medium-high heat, lifting up the cooked egg around the edges to let the uncooked egg flow underneath for about 3 minutes. Reduce heat to medium and cook covered for five minutes; the center will still be moist. 6. Remove the lid and broil the frittata 5 to 7 inches from heat until set, about 5 minutes. Sprinkle the top evenly with the remaining half of the Parmesan, then broil until cheese melts and frittata is golden brown, about 2 to 3 minutes more. Slide onto a platter and cut into wedges. CHEF TIPS Try tipping all the veggies into the bowl with the eggs, and wipe the skillet clean with oiled paper before putting the egg mixture in—the frittata often sticks less that way. If you have a well-seasoned cast iron skillet, use it—it’s the best pan for making frittatas. NUTRITION FACTS (per serving) Calories: 351; fat: 23 g; saturated fat: 7 g; polyunsaturated fat: 3 g; monounsaturated fat: 12 g; carbohydrates: 16 g; sugar: 3 g; fiber: 21 g; protein: 21 g; sodium: 641 mg
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Craig Ramsay is a fitness expert, an author and a winner of season 8 of The Amazing Race Canada. Follow him on Instagram at @craigramsayfit.
(FRITTATA) COURTESY OF COOK FOR YOUR LIFE; (BOARDS) ISTOCK; (RAMSAY) COURTESY OF CRAIG RAMSAY
INGREDIENTS 6 whole large eggs 2 large egg whites ½ cup finely grated Parmesan cheese 1⁄3 cup thinly sliced fresh basil
Try to eat as healthy as you can. Watch what you eat—especially when eating out. You would be shocked at the junk some restaurants use to flavor your food. Ask for sauces to be served on the side, choose lean meats with steamed veggies and always request that they use no butter or oil.
BASICS BY LIZ HIGHLEYMAN
CHLAMYDIA Left untreated, this common STI can cause cause serious long-term complications.
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HLAMYDIA IS A SEXUALLY transmitted infection (STI) caused by Chlamydia trachomatis bacteria. It is often asymptomatic, so regular screening is recommended for people at risk. Chlamydia can be easily treated with antibiotics, but if left untreated, it can lead to serious complications. Chlamydia is the most common bacterial STI in the United States, and new cases have risen steeply over the past three decades. More than 1,640,000 cases were reported in 2021, but many infections remain undiagnosed. Around two thirds of chlamydia cases occur among young people ages 15 to 24. Young women and gay and bisexual men both have high rates. HIV-positive people with chlamydia are more likely to transmit the virus, and HIV-negative people with chlamydia are more likely to acquire HIV. A majority of people with chlamydia have few or no symptoms, but some develop inflammation of the cervix, urethra or rectum. Depending on the site of infection, symptoms may include pain or burning during urination, white or grayish discharge from the penis or vagina, rectal discharge and pain or a sore throat. Less commonly, chlamydia can affect the eyes, causing conjunctivitis. If left untreated, chlamydia can lead to long-term complications. Women
can develop pelvic inflammatory disease, or infection of the reproductive organs. Symptoms may include fever, pain in the lower abdomen, pain or bleeding during intercourse and vaginal bleeding between menstrual periods. Over time, scar tissue can form around the uterus, fallopian tubes and ovaries, which may lead to chronic pelvic pain, infertility and ectopic pregnancy. Complications in men can include inflammation of the testicles or prostate. PREVENTION AND TREATMENT Chlamydia spreads primarily through vaginal, anal and oral sex. Pregnant people with chlamydia can transmit the bacteria to their babies during delivery. Chlamydia doesn’t spread through casual contact, such as hugging or kissing. Infection does not confer lasting immunity, so it is possible to get chlamydia multiple times. Condoms and dental dams offer good protection against chlamydia. Taking the antibiotic doxycycline as post-exposure prophylaxis after sex— known as doxyPEP—reduces the risk of acquiring chlamydia, gonorrhea and syphilis for gay men and transgender women, but this approach didn’t work for cisgender women in one study (see “DoxyPEP 101,” page 28). There is currently no vaccine for chlamydia, but research is underway.
Get tested if you have STI symptoms or if a sex partner tests positive. Chlamydia is usually diagnosed with a urine test or using a swab to take a fluid sample from the vagina, penis, rectum or throat. The Centers for Disease Control and Prevention recommends annual chlamydia screening—even if asymptomatic—for sexually active women under age 25 and older women at increased risk. Men who have sex with men should be screened at least annually or every three to six months if they’re at increased risk—for example, if they have multiple sex partners, are HIV positive or are taking pre-exposure prophylaxis (PrEP). If diagnosed with chlamydia, inform sex partners and hold off on having sex until treatment is completed. Chlamydia can be treated and cured with antibiotics. The usual treatment involves either a seven-day course of doxycycline pills or a single dose of oral azithromycin. These drugs are safe and generally well tolerated. Even if symptoms improve, it’s important to take the full course of medication to prevent drug resistance. People with STIs often experience shame or stigma, which can discourage seeking care. While chlamydia can be cured, antibiotics do not reverse existing damage, so it’s important to get tested and treated promptly. Q
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CARE & TREATMENT BY LIZ HIGHLEYMAN
WEIGHT-LOSS DRUGS FOR PEOPLE WITH HIV Weight gain is a growing concern for people living with HIV, but medications such as semaglutide (Wegovy or Ozempic) and tirzepatide (Zepbound or Mounjaro) look promising. Eating a healthy diet and getting enough exercise is sound advice, but lifestyle changes are often not enough to shed excess pounds. Semaglutide is a glucagon-like peptide-1 (GLP-1) receptor agonist that suppresses appetite, regulates insulin and blood sugar and slows emptying of the stomach. Tirzepatide mimics the action of both GLP-1 and a second hormone called GIP. There hasn’t been much research on weight-loss meds for people with HIV, but data are starting to emerge. In one small retrospective study, HIV-positive people with type 2 diabetes, most of whom used older GLP-1 agonists, lost an average of 23 pounds, and over half achieved at least 5% weight loss—more than their HIV-negative peers. A larger study found that people with HIV who used GLP-1 drugs, mostly semaglutide, lost about 12 pounds, and nearly a quarter achieved greater than 5% weight loss. A third study assessed the effects of semaglutide on lipohypertrophy, or excess abdominal fat. Here, 108 HIV-positive nondiabetic adults were randomly assigned to receive semaglutide or a placebo for 32 weeks. Body weight fell by 8.3% in the semaglutide group while rising by 0.2% in the placebo group. People taking semaglutide lost more visceral and trunk fat than placebo recipients, but they also lost more limb fat and lean body mass, raising concerns about wasting. Together, these studies suggest that weight-loss drugs are a feasible option for people with HIV who struggle to lose weight or reduce abdominal fat, though they are not without drawbacks, including gastrointestinal side effects and high cost. “GLP-1 agonists are revolutionizing the treatment of obesity in the general population, and I have no doubt they will do the same in people with HIV,” says Rajesh Gandhi, MD, of Harvard Medical School.
Expanding PrEP Coverage A decade after its debut, pre-exposure prophylaxis (PrEP) has yet to reach its full potential. In October, the Centers for Disease Control and Prevention (CDC) released new HIV surveillance data showing that, overall, 36% of the 1.2 million people who could benefit from PrEP were prescribed it in 2022, up from 23% in 2019. But there are large gaps in coverage. While 94% of white people who could benefit received a PrEP prescription, this fell to 24% for Latino people and only 13% for Black people. About 40% of men who could benefit were prescribed PrEP, compared with just 15% of women. Barriers to PrEP use include lack of awareness, cost and a shortage of providers. In August, the U.S. Preventive Services Task Force recommended all approved PrEP methods—two different daily pills and long-acting injections—which requires insurers to fully cover them. And under a new federal policy, Medicare will cover PrEP for people ages 65 and older. “Continued and expanded efforts will be vital to overcome the significant barriers that continue to hinder PrEP uptake, including lack of knowledge and lack of trusted or easily accessible PrEP providers in many communities,” according to Robyn Fanfair, MD, MPH, and Jonathan Mermin, MD, MPH, of the CDC.
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HIV Gene Therapy Looks Safe—but Does It Work? In October, researchers reported that a CRISPR-based gene-editing therapy known as EBT-101 appears safe so far in a pilot study, but they didn’t say whether it works. Nevertheless, the U.K. Daily Mail ran a headline stating that a cure for HIV “could be months away.” Antiretroviral therapy keeps HIV suppressed indefinitely, but the virus inserts its genetic blueprints into human cells and establishes a longlasting reservoir that makes a cure nearly impossible. Kamel Khalili, PhD, of Temple University in Philadelphia, and colleagues developed a CRISPR-Cas9 tool that acts as “molecular scissors,” showing that it can snip viral DNA out of cells in mice and monkeys. An early human trial of EBT-101, from Excision BioTherapeutics, is enrolling HIV-positive people on antiretroviral therapy with an undetectable viral load. The first three treated participants experienced no serious adverse effects. They were supposed to stop antiretrovirals 12 weeks after
EBT-101 administration to see whether their virus would rebound, but the first patient, who received the gene therapy in July 2022, is well past that point. Excision has not provided further information about his status but indicated that additional data will be presented in 2024. “It’s encouraging that this research is progressing, but there is as yet zero evidence that this approach can cure HIV in people, let alone within months,” says Richard Jefferys of the Treatment Action Group, adding that misleading media reports can “create false hopes.”
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HEPATITIS C CARE FOR THE VULNERABLE Offering hepatitis C treatment when and where people are diagnosed increases the likelihood of a cure, but there’s still room for improvement. Hepatitis C virus (HCV) can be easily treated with an 8- or 12-week course of direct-acting antiviral therapy, but many people are not aware of their status, and only a third have been successfully treated, according to the Centers for Disease Control and Prevention. Researchers at the University of California San Francisco analyzed a new model of HCV care in the No One Waits study. They recruited participants to a neighborhood testing site via street outreach that targeted people experiencing homelessness and people who inject drugs, offering small cash payments as an incentive. Participants were screened for HCV antibodies. People who tested positive had a follow-up HCV RNA test, and those with active infection received a two-week starter pack of Epclusa (sofosbuvir/ velpatasvir) tablets. They returned every two weeks for three months to get more medication, and study staff delivered meds to those who didn’t show up. Of the 492 people who were initially screened, half were HVC antibody positive, and 111 (23%) had active infection. Of these, 89 returned for their HCV RNA results, and all but two started treatment. People were lost at several points along the care continuum, but among those who completed treatment and follow-up testing, 84% were cured. “Offering hepatitis C treatment at the point of diagnosis streamlines care, saving both time and money,” says lead study author Meghan Morris, PhD, MPH. What’s more, delivering care in nonclinical settings, such as shelters and libraries, could help tackle stigma, a major barrier to achieving a cure.
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RESEARCH NOTES
PREVENTION
TREATMENT
CURE
CONCERNS
PrEP for Trans Women
Rukobia at Five Years
Delayed HIV Rebound
Anal Cancer
Apretude (long-acting cabotegravir) injections every other month are a safe and effective pre-exposure prophylaxis (PrEP) option for transgender women. The HPTN 083 trial enrolled more than 4,500 cisgender men and trans women. They were randomized to receive Apretude or daily oral TDF/FTC (Truvada). Overall, Apretude was about 66% more effective than daily PrEP pills. The researchers then looked in detail at the 570 trans women in the trial (13%). They were primarily from Asia and Latin America, and most were under age 30. Childhood sexual abuse, intimate partner violence, depression and drug and alcohol use were common. More than a quarter did not agree that they were at risk for HIV, but their high incidence of sexually transmitted infections said otherwise. There were two HIV seroconversions in the Apretude group and seven in the TDF/FTC group, or 0.54 versus 1.80 cases per 100 person-years. Both forms of PrEP were well tolerated. Cabotegravir concentrations did not differ significantly based on use of genderaffirming hormones.
Rukobia (fostemsavir), the only HIV attachment inhibitor, maintains durable viral suppression for five years. The Phase III BRIGHTE trial evaluated Rukobia in heavily treatment-experienced people with multidrug-resistant HIV who were unable to build an effective regimen using existing drugs. A randomized cohort of 272 participants received twice-daily Rukobia plus an optimized background regimen, which included at least one fully active drug; 99 people with no fully active drugs were enrolled in a nonrandomized cohort. At 48 weeks, 54% of Rukobia recipients in the randomized cohort and 38% in the nonrandomized cohort had an undetectable viral load. At 240 weeks, 45% and 22%, respectively, had viral suppression. When excluding people who discontinued Rukobia or lacked data, response rates rose to 82% and 66%. Mean CD4 cell gains at five years were 296 and 240 in the two cohorts, and most people who started with less than 50 cells reached a count of 200 or more. What’s more, participants saw improvements in biomarkers associated with comorbidities and mortality.
Budigalimab (ABBV-181), a monoclonal antibody that blocks the PD-1 immune checkpoint receptor on T cells, may help control HIV after stopping antiretroviral therapy (ART). Commonly used for cancer immunotherapy, checkpoint inhibitors restore T-cell activity. In a Phase I pilot study, 11 people on ART received four doses of 10 mg budigalimab every two weeks, while five received a placebo; they stopped antiretrovirals on the day of their first dose. Several budigalimab recipients showed delayed viral rebound or viral control. Six people considered good responders had a lower peak viral load after rebound than placebo recipients. One person maintained an undetectable viral load for about 50 days, then saw an increase to about 350 copies, followed by sustained suppression below 100 for 19 months. Another experienced a viral load spike about 20 days after ART interruption, followed by a rapid decline and sustained suppression below 200 for 18 months. These early findings suggest PD-1 inhibitors might be part of a combination functional cure strategy.
HIV-positive people treated with a topical medication were about equally likely to experience improvement of precancerous anal cell changes as those who underwent electrocautery, a procedure that uses electricity to burn off abnormal lesions. The TECAIN trial enrolled 233 people with precancerous anal intraepithelial neoplasia (AIN). They were randomized to receive 85% trichloroacetic acid (TCA) or electrocautery. Four weeks after the last treatment, 53% of people in the TCA group experienced resolution or regression of anal lesions, as did 62% of people in the electrocautery group. By six months, 51% and 49% experienced healing or a downgrade of their AIN stage. Fewer people successfully treated with TCA experienced recurrence. TCA required more administrations but led to fewer side effects. People who underwent electrocautery were more likely to report pain and require anesthesia or sedation. What’s more, TCA doesn’t require complex equipment and can be applied in an ordinary doctor’s office by physicians without special training.
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BY LIZ HIGHLEYMAN
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PEOPLE BORN WITH HIV ARE RECLAIMING THEIR EXPERIENCES— AND GIVING THEMSELVES A NEW NAME. BY ALICIA GREEN
A
S A LITTLE GIRL, PORCHIA DEES AND HER family drove an hour from their home in San Bernardino, California, to Children’s Hospital Los Angeles every month. These visits were routine for Dees, who was always sick and on medication. She had a team of doctors and social workers she saw often.
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Porchia Dees at Joshua Tree National Park in California
Dees knew something was wrong, but she couldn’t figure it out. One day, she finally learned the truth. “I had always heard the word HIV,” says Dees, now a 37-year-old health educator and HIV advocate. “I just didn’t know what it was.” When Dees was about 11 or 12 years old, a social worker gave her an HIV 101 lesson. Dees learned about the different ways the virus could spread. Once it was over, the social worker broke the news to her. “She finally told me that I had HIV, then asked me if I had any questions,” Dees recalls. “I didn’t really know what to say. I kind of froze up. I just remember feeling like that was a lot to take in.” That was the day Dees learned that she was born with HIV. She had always known that her mother struggled with addiction and was sick. That was also the day she learned that her mom was living with HIV.
year and why we continue to fall through the cracks,” Dees says. “Then we brought our mothers who we lost into the space,” she says, referring to the moment when the survivors took turns saying the names of their deceased mothers. “It was powerful.” THAT DEMONSTRATION AT USCHA WAS YEARS in the making. It all started about five years ago, when Dees applied for a scholarship to attend the national conference. The scholarship was for long-term survivors aging with HIV. “I’m not 50-plus, but I’ve been living with HIV for my entire life,” Dees says. “I was 32 and living with HIV for as long, if not longer, than a lot of the folks who were 50 and older. So I applied and wrote my essay on why I should get the scholarship.” Dees was awarded the scholarship by NMAC (formerly the National Minority AIDS Council), which produces USCHA. She was the only person under age 50 selected to receive it. The 50+ scholars program then developed the National HIV and Aging Advocacy Network, which Dees also applied to join. She was allowed to form a special interest group for people living with HIV since birth or early childhood. The group was very small at first. But as membership grew, it took on a new life. It became the Lifetime Survivors Cohort, and Dees is one of its chairs. Helping her along the way was another lifetime survivor, Grissel Granados. “Grissel has been mentoring me and helping me develop the programming for the cohort,” Dees says.
MAKING IT TO HER PREteens was a big deal because Dees wasn’t supposed to live to see age 5. Year after year, she surprised her doctors. At the height of the AIDS epidemic, children born with HIV were not expected to survive. A diagnosis was considered a death Porchia sentence. However, some beat the odds and Dees grew up. advocates The road to adulthood wasn’t always for those born with easy. Many struggled along the way, and HIV. today, some feel forgotten. “Compared to the entire population of people in the United States, there are not very many people living with HIV,” Dees says. “Not a lot of people know someone living with HIV. But then, even in our own community, not a lot of people living with HIV know someone who was born with it. We feel isolated even within our community.” But now these adults born with HIV are making it known that they’re still here and want to be recognized. They don’t want to be called verticals or perinatals, terms that identify them according to how they acquired the virus. Rather, they prefer to be known as lifetime survivors or dandelions—in honor of the late lifetime survivor and writer Mary Bowman, whose poem “Dandelion” was a tribute to her mother and others with HIV. (Bowman’s mother died of AIDS-related illness when Bowman was 3 years old.) Last September, the largest group of lifetime survivors convened at the annual United States Conference on HIV/ AIDS (USCHA) held in Washington, DC. During the first day of USCHA, they demonstrated onstage and introduced themselves to the HIV community as lifetime survivors. “We gave statistics about how prevalent we are around the United States and worldwide, how many of us are dying each
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PEOPLE BORN WITH HIV HAVE LONG BEEN CONsidered long-term survivors. Being born with HIV means they have lived long term with the virus. But Granados believes that lifetime survivors have unique distinctions. “We’re long-term survivors, but we’re also lifetime survivors,” says Granados, a 37-year-old HIV advocate from Los Angeles. “Nobody else knows what it’s really like to be living with HIV from day one and to have complicated relationships with your parents around it.” Granados explains that being raised in the shadow of their parents’ experience of stigma and secrecy caused emotional and mental trauma for many lifetime survivors. But being born with HIV also physically affected this group differently than other people living with HIV. “A lot of us grew up experiencing pretty intense medical issues at a young age because of the effects of HIV on our bodies before antiretrovirals and then also the effects of the medications,” Granados says. Growing up with HIV meant lifetime survivors had weakened immune systems from an early age, rendering them more susceptible to other health issues. For example,
PREVIOUS PAGES AND THIS SPREAD: (DEES) KEVIN MCDERMOTT
“NOT A LOT OF PEOPLE LIVING WITH HIV KNOW SOMEONE WHO WAS BORN WITH IT.”
WHAT’S MORE, LIFETIME SURVIVORS TEND TO be left out of conversations about people aging with HIV, which tend to center people ages 50 and older, excluding the nearly 10,000 adults in the United States who were born with HIV. “There isn’t clear information about what symptoms are arising because you’re over 50 and what symptoms are coming up because you’ve been living with HIV for 30 or 40 years, which is where we come in,” Granados says. “If you’re saying that all of this is happening because Richard Adkins you’re a long-term survivor, then that is making a applies to me, right?” difference.
Lifetime survivors are experiencing some of the same issues as older people with HIV but at younger ages. Some have dealt with kidney failure, bone loss and HIV-associated cognitive issues, among other concerns. “The virus has affected us all differently,” Dees says. “Some people in the lifetime survivors group can’t work.” Lifetime survivors have also felt as though they’ve fallen through the cracks in the transition from pediatric care to adult care. Once they were older, they were immediately grouped with other adults living with HIV. FOR DEES AND GRANADOS, ONE OF THE HIGHlights of the lifetime survivors gathering at USCHA was connecting with one another. Twelve lifetime survivors had been awarded scholarships to attend the four-day conference. But by the end of USCHA, the cohort had grown to 20. “It’s the biggest visual representation that people have probably ever seen,” Granados says. “There hadn’t been a national gathering probably ever of this group outside of camps that we aged out of 15 to 20 years ago.” Those camps connected kids born with HIV to others like them, often for the first time in their lives. As they became older, though, they lost these connections. Some lifetime survivors never experienced such communities. These survivors began to feel socially isolated and alone. But as they continue to organize, lifetime survivors are once again finding community or experiencing it for the first time. “It felt very good for us to be able to reconnect and have a space to come together because we lost that from when we were children,” Dees says. Richard Adkins was one of the lifetime survivors who connected with the cohort at USCHA. The 33-year-old accountant and HIV advocate from Gaithersburg, Maryland, was part of a panel at the conference. He met Dees as they happened to be walking in the same direction. The two started talking about their experiences as adults born with HIV. Subsequently, Adkins joined Dees and other lifetime survivors at a dinner.
“WE WERE ALREADY JUDGED FOR HAVING HIV BEFORE WE COULD STAND ON OUR OWN.” 26 POZ JANUARY/FEBRUARY 2024 poz.com
COURTESY OF RICHARD ADKINS
Granados was diagnosed with cancer at age 10. (Studies have shown a correlation between HIV and some cancers.)
“I felt like this was something that was needed and was happy to be a part of the cohort in any way that I could,” Adkins says. “Knowing some of the people I met there for five minutes, it was like they get me, and I get them. Even though we lived our own separate lives, I understood because I was also walking in that same lived experience.”
COURTESY OF GRISSEL GRANADOS
ADKINS GREW UP EXPERIENCING STIGMA from a young age. When he was 7 years old, he learned that he was born with HIV. “I attributed my new life to the HIV diagnosis,” Adkins says. “Before we found out, I was a ‘normal’ kid. Now I was always in protective mode, not letting those around me know what was going on for fear that it would be used against me.” But as he got older, camps and support groups helped him work through his stigma and to accept himself. “What makes lifetime survivors different is that we grew up in a world where we were already judged for having HIV before we could stand on our own,” Adkins says. “Thanks to medical advancements now, there are not many kids born with HIV, so we are also forgotten about. But we’ve been dealing with the pain, trauma and medical side effects for years.” Now, these lifetime survivors are advocating for themselves. And Adkins wants to do his part. “We’re making a difference,” Adkins says. “There are people who think if you acquire HIV your life is over. Lifetime survivors know that’s not the case.” Adkins and other members of the Lifetime Survivors Cohort meet virtually every two weeks to plan events and discuss how they can continue to expand the group. They have already opened up the group to include those who acquired HIV through blood transfusions at a young age. “As a group, we’ve talked about different things, including having retreats and mental health workshops,” Adkins says. “We’ve talked about empowering us to do training to educate people on what lifetime survivors are going through.” COMING TOGETHER AT USCHA WAS JUST THE beginning for the Lifetime Survivors Cohort. The cohort is also dedicated to ensuring that lifetime survivors have a seat at every table. One of the areas in great need of their voices is the research field, Granados says. “It’s being able to have dedicated research and to have better data come out of research that exists, even if it isn’t specific to our population,” she says. “It’s making sure that we’re always counted and that our data is significant.” “We need support to continue keeping us organized, raising awareness around who we are and to ensure that we are not forgotten moving forward,” Granados says. But it’s not just older lifetime survivors they want to recruit to their movement. Dees hopes that they can reach the babies still being born with HIV as well as adolescents or emerging
adults living with HIV. They don’t want these young people to fall through the cracks like some of them did.
Grissel Granados is adding her voice to research.
THE ONE MESSAGE THESE LIFETIME SURVIVORS hope reaches others like them is: You are not alone. There are thousands of lifetime survivors who have experienced the same things as you. They know what you’ve been through and are here for you. Granados believes it’s the perfect time for lifetime survivors to organize. These survivors have grown up and gained the confidence that comes with adulthood to advocate for themselves. They have also accepted their HIV status. “Our experiences matter and deserve to be represented,” Granados says. “Our issues deserve to be addressed. We don’t need somebody else telling us what we need, what we want, what we should do or how to do it. We’re at the point where we got this.” Adkins agrees. “For us to have this lifetime survivors movement,” he says, “it’s the opportunity that we can define who we are ourselves without waiting for somebody else to give us the space or the opportunity.” Q
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EVERYTHING YOU NEED TO KNOW ABOUT TAKING AN ANTIBIOTIC AFTER SEX TO HELP PREVENT SEXUALLY TRANSMITTED INFECTIONS BY LIZ HIGHLEYMAN
STI rates have been rising worldwide in recent decades. In the United States, there were more than 2.5 million cases of chlamydia, gonorrhea and syphilis in 2021, according to the Centers for Disease Control and Prevention (CDC). Gay and bisexual men, transgender women, young people and Black people are disproportionately affected. While PrEP is highly effective at preventing HIV, forgoing condoms leaves people
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prone to bacterial STIs. Although usually not life-threatening, STIs are more than just a nuisance: Left untreated, they can lead to serious long-term complications. Regular screening allows for prompt treatment, but it would be better to prevent STIs in the first place. Here’s how doxyPEP works: A single 200 milligram dose of doxycycline is taken ideally within 24 hours—but no later
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A decade after the debut of HIV pre-exposure prophylaxis (PrEP), there’s a new way to have safer sex. Doxycycline post-exposure prophylaxis, or doxyPEP, is a morning-after pill that lowers the risk of chlamydia, gonorrhea and syphilis. Studies show that this can be an effective approach for people at high risk for sexually transmitted infections (STIs)—but it’s not for everyone.
than 72 hours—after anal, vaginal or oral sex. Doxycycline can be taken on consecutive days if sex is repeated, but no more than one dose in a 24-hour period. It is safe to take doxycycline with PrEP. Because it’s an antibiotic, doxycycline doesn’t prevent viral STIs, such as human papillomavirus (HPV), mpox or herpes. In October 2023, the CDC issued the first national doxyPEP guidelines. Even before that, some clinics with a large gay clientele were already rolling it out. Public health officials and advocates are hopeful that this approach might finally make a dent in high and rising STI rates. “DoxyPEP is moving STI prevention efforts into the 21st century,” says Jonathan Mermin, MD, MPH, director of the CDC’s National Center for HIV, Viral Hepatitis, STD and TB Prevention. “We need game-changing innovations to turn the STI epidemic around, and this is a major step in the right direction.” WHAT DOES THE RESEARCH SHOW? STI prophylaxis is not new. In a small pilot study started in 2011, Jeffrey Klausner, MD, MPH, now at the University of Southern California, and colleagues found that gay and bisexual men who were randomly assigned to receive daily doxycycline prophylaxis were significantly less likely to test positive for chlamydia, gonorrhea or syphilis. “It’s amazing to see almost 15 years later how an idea can become a reality,” Klausner told POZ. “The CDC guidelines on doxycycline prophylaxis for STIs are testament to the adage ‘Never give up,’ because one day your ideas, through rigorous research and the hard work of many people, can become a reality.” Other researchers asked whether taking an antibiotic as a morning-after pill, rather than every day, could also be effective. As part of the IPERGAY trial, a French PrEP study, a subgroup of 232 men who have sex with men were randomized to receive a single dose of doxycycline within 24 hours after sex or no STI prophylaxis. In 2017, Jean-Michel Molina, MD, of the University of Paris Cité, and colleagues reported that doxyPEP lowered the risk of chlamydia by 70% and syphilis by 73%, but it did not significantly reduce gonorrhea risk. Following up on these early findings, the DoxyPEP trial, conducted at public health clinics in San Francisco and Seattle, enrolled more than 500 men who have sex with men and transgender women who’d had an STI during the past year. They were randomly assigned to receive a single dose of doxycycline within 72 hours after sex or standard care, which is regular STI testing and treatment. At the 2022 International AIDS Conference in Montreal, Annie Luetkemeyer, MD, of the University of California San Francisco, reported that doxycycline reduced STI diagnoses by 62% per quarter for HIV-positive participants and by 66% for people on PrEP. STIs were diagnosed at 11% to 12% of quarterly visits in the doxycycline group versus 31% to 32% in the standard care group. But here, too, the risk reduction was greater for chlamydia (74% in the HIV-positive group and 88% in the PrEP group) and syphilis (77% and 87%, re-
spectively) than for gonorrhea (57% and 55%, respectively). “Using doxycycline after condomless sex has potential as an effective strategy to substantially reduce sexually transmitted infections in targeted populations with ongoing high rates of STIs,” Luetkemeyer told POZ at the time. At the 2023 Conference on Retroviruses and Opportunistic Infections (CROI), Molina reported comparable results from the French DoxyVAC study, in which gay and bisexual men on PrEP were randomly assigned to receive doxycycline or standard care and separately randomized to receive a gonorrhea vaccine or not. DoxyPEP reduced the risk of chlamydia, syphilis and gonorrhea by 89%, 79% and 51%, respectively. But CROI attendees also heard some bad news. A study called dPEP Kenya found that taking doxycycline after sex did not offer the same protection for young cisgender women. Overall STI incidence was high, with no significant differences between the doxyPEP and standard care groups, reported Jennell Stewart, DO, MPH, of the Hennepin Healthcare Research Institute in Minneapolis. The reason for these disappointing results is unclear. Although drug concentrations appeared high enough to inhibit bacterial STIs, many of the women reported suboptimal adherence, and less than a third had detectable doxycycline levels at all study visits. This suggests that doxyPEP might still work for women who use it consistently. DOXYPEP CONCERNS In all these studies, doxyPEP was generally safe and well tolerated. But doxycycline can cause side effects—mainly gastrointestinal symptoms, such as nausea, diarrhea and heartburn. Taking the pills with food and at least a half hour before lying down helps reduce these effects. The antibiotic can also cause photosensitivity, so people who use it are advised to avoid direct sunlight and wear sunscreen. Pregnant people should not use doxycycline because it can harm the fetus. Another doxyPEP concern is that frequent antibiotic use could disrupt the microbiome, the ecosystem of healthy bacteria that normally live in the gut and elsewhere in the body. The new CDC guidance states that this risk will have to be closely monitored going forward. Perhaps the biggest worry is that widespread use of antibiotics can lead to drug resistance. While analysis is still ongoing, early findings from the DoxyPEP trial are reassuring. “We didn’t see a marked increase in antimicrobial resistance associated with doxyPEP use,” Luetkemeyer told reporters at CROI. “We need larger and longer studies of what happens to common bugs,” but this must be weighed against the benefits of a substantial reduction in STIs. Another problem is that doxyPEP will likely be less effective in areas where gonorrhea is highly resistant to tetracycline antibiotics. Even if doxyPEP doesn’t drive emergent resistance itself, people using doxycycline could be more likely to acquire resistant strains. In fact, higher local prevalence of resistant gonorrhea may help explain why doxyPEP didn’t work as well in France as it did in the U.S. trial and did not adequately protect women in Kenya.
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DOXYPEP IMPLEMENTATION Long before the recent clinical trials, some gay and bisexual men were already using doxycycline or other prophylactic antibiotics on their own, obtaining the meds from sympathetic doctors or through informal channels and sharing experiences and advice on social media. In fact, surveys conducted in Australia and the United Kingdom suggested that some 10% of gay men on PrEP had used antibiotics for STI prevention. But without definitive evidence and official guidelines, it was “doxy anarchy,” in the words of Oliver Bacon, MD, MPH, of San Francisco City Clinic. As more study results came in, health departments and clinics in cities with large gay populations decided it was time to start rolling out doxyPEP. The San Francisco Department of Public Health issued the first guidance in October 2022. The San Francisco AIDS Foundation’s Magnet clinic “jumped on board right away, came up with our own protocols and communicated it out to the community,” according to Roman. To date, almost 2,400 clients have started doxyPEP; 40% of them are in Magnet’s HIV PrEP program as well. “I really think of it as a game changer, very similar to how we saw PrEP in 2012,” Roman told POZ. It’s still too early to determine effectiveness, but things look promising so far. “We’ve preliminarily been able to demonstrate really sharp declines in positivity rates for syphilis and chlamydia, but also for gonorrhea,” Roman says. “At least early on, we’re able to show that [doxyPEP] really is making an impact. We’re hoping as more people are on it longer, we’ll be able to show a decrease in STI rates in San Francisco.” Howard Brown Health in Chicago, the Fenway Institute
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Clockwise from top left: in Boston, the Los Angeles Annie Luetkemeyer; LGBT Center and health Jorge Roman; Anu Hazra; departments in Seattle and Jean-Michel Molina New York state also adopted doxyPEP early on. Notably missing is the South—the region with the highest HIV and STI rates. Howard Brown Health created a doxyPEP protocol about two years ago, but implementation was initially slow due to competing demands, including COVID-19 and mpox, according to Anu Hazra, MD, of Howard Brown and the University of Chicago. The new data have revitalized the effort. “It’s sort of in the conversation right now, and people are sometimes coming to us asking for it,” he told POZ. Howard Brown’s doxyPEP program focuses on “frequent flyers” who come through the clinics with STIs every few months as well as HIV patients who have had more than one STI during the past year. To date, about 300 people have started doxyPEP. Again, it’s too soon to tell how well it’s working, “but I will tell you anecdotally that I see some of my frequent flyer patients on doxyPEP much less frequently, if at all, for symptomatic bacterial STIs,” Hazra says. According to the CDC’s new national doxyPEP guidelines, a single dose of doxycycline taken within 72 hours after anal, vaginal or oral sex “should be considered” for gay, bisexual and other men who have sex with men and for transgender women who have had gonorrhea, chlamydia or syphilis at least once during the past year. In addition, doxyPEP “could be considered” for gay and bi men and trans women who have not been diagnosed with an STI if they
(LUETKEMEYER) COURTESY OF UCSF; (ROMAN) COURTESY OF SF AIDS FOUNDATION; (HAZRA) COURTESY OF ANU HAZRA; (MOLINA) LIZ HIGHLEYMAN
On the other hand, doxycycline is widely used to treat acne and to prevent malaria and Lyme disease, and this doesn’t seem to have driven resistance. Molina said he does not expect that a small amount of additional use by gay and bisexual men would change that. What’s more, this pales in comparison with overuse of antibiotics in hospitals and the meat industry, Jorge Roman, NP, senior director of clinical services at the San Francisco AIDS Foundation, suggests. “I think a lot of the focus on antibiotic resistance is really based on stigma,” he says. “People are uncomfortable talking about the sex lives of people who are already stigmatized.” He noted that fears about drug resistance and condomless sex were also used to discourage PrEP—fears that proved to be unfounded. Ultimately, doxyPEP could potentially reduce the use of antibiotics if it lowers STI prevalence. Luetkemeyer noted that participants taking doxyPEP in her study used about half as much ceftriaxone (a medication commonly used to treat gonorrhea), while those in the control group acquired STIs so often that they spent a substantial amount of time on antibiotic treatment anyway.
will be participating in sexual activities known to increase the likelihood of STI exposure. However, due to a lack of supporting evidence, “no recommendation can be given at this time” for cisgender women, cisgender heterosexual men, transgender men or other queer or nonbinary people. These guidelines recommend doxyPEP for the group with the strongest evidence of benefit but “leave the door open for other populations,” Luetkemeyer says. “Clinicians can use the guidance to have a case-by-case discussion with people who aren’t included in the recommendation to decide if doxyPEP makes sense while we are learning more.” Local and practice-specific guidelines generally align with the CDC’s, but some are a bit broader. San Francisco’s guidance includes transgender men along with cisgender gay and bi men and trans women, and it applies to those who have multiple male sex partners even if they have not recently had an STI. The California Department of Public Health goes further, saying providers can offer doxyPEP to all nonpregnant people at increased risk for STIs and to those requesting doxyPEP, even if they have not previously been diagnosed with an STI or have not disclosed their risk status. Seattle says providers can consider prescribing doxyPEP on an episodic basis when patients anticipate periods of higher risk. New York state includes men who have condomless sex with multiple female partners—an important consideration since STI complications can be especially severe for women and their babies. Experts hope the CDC guidelines will encourage use of doxyPEP beyond the pioneering cities and will make more providers feel comfortable discussing and prescribing it. “Guidelines are an important first step to address equitable access for those who are most impacted by recurrent STIs and who may be at risk for lack of access, given existing health disparities,” says Luetkemeyer.
need it most, mirroring what is happening with PrEP. Twelve years after its approval, Black and Latino men who have sex with men and cisgender women of all races and ethnicities are still much less likely to use PrEP than white gay men. “That’s always the concern with interventions such as this. It always comes down to who has the most access, who has the most information, who can take time out of their busy lives to even step into a clinic,” Roman says. “Equity has always been on our mind since the very beginning.” People who could potentially benefit from this new prevention tool may not have access to sex-positive providers who know about doxyPEP and will offer it without stigma. Others have little connection with the health care system, don’t trust medical providers or have competing priorities. Fortunately, unlike PrEP in its early years, generic doxycycline is inexpensive—as little as $1 per pill—so cost should not be a major barrier. “As with any newfangled intervention, whether it be PrEP or long-acting injections for HIV treatment or prevention, these inequities fall along racial and socioeconomic fault lines,” Hazra says. The largely white clients at Howard Brown’s North Side Chicago clinics have been accessing doxyPEP first, he says, and “we are trying really intentionally to make sure that our South Side clinics that largely serve Black and brown men who have sex with men and trans women will have the capability to implement this among their patients too.” “I feel like, in a lot of ways, we’re making the same mistakes we made with HIV PrEP a decade ago in terms of who is getting doxyPEP versus who truly needs it,” Hazra continues. What’s more, “Women and trans men and nonbinary folks assigned female at birth continue to find themselves in a really frustrating place where they don’t have access to this intervention because there aren’t more studies looking at them.” If it’s properly implemented, though, doxyPEP could help turn the tide on the burgeoning STI epidemic. “When I discovered PrEP at age 40, it ended the connection between condomless intimacy and a life-threatening illness. However, PrEP did not eradicate the fear of other STIs,” Damon Jacobs, a licensed marriage and family therapist and longtime prevention advocate, told POZ. “Once I started utilizing doxyPEP in 2017, that last bond between sex and fear was severed,” he says. “It is important to me that people of all HIV statuses understand this unprecedented opportunity before us—not only to collectively participate in reducing STI transmission in our sexual networks but also to individually experience the abundant joy that comes from being proactive, responsible and empowered about one’s pleasure and protection from STIs.” Q
“WE NEED GAMECHANGING INNOVATIONS TO TURN THE STI EPIDEMIC AROUND.”
EQUITABLE ACCESS DoxyPEP early adopters have positive things to say about it. The DoxyPEP trial investigators interviewed a subset of 44 participants about their experiences. In general, they found doxyPEP acceptable and easy to adhere to, and they said side effects were manageable. They reported little change in their sexual practices. Users said doxyPEP benefited their quality of life and mental health, reduced their anxiety, gave them peace of mind and helped them feel more in control. Notably, though, many thought doxyPEP was not necessary for oral sex. While oral sex carries little risk for HIV, it can transmit chlamydia, gonorrhea and syphilis. But equitable access to doxyPEP is a big concern. Health officials and advocates worry that it won’t reach the people who
poz.com JANUARY/FEBRUARY 2024 POZ 31
HEROES BY JAY LASSITER
Gary Paul Wright of Newark is executive director of the African American Office of Gay Concerns (AAOGC), which he cofounded in 2001 and the mission of which is “to ensure men of color have a voice in the fight against HIV/AIDS.” Along the way, Wright has become the godfather of the Garden State’s LGBTQ community. “Gary’s activism over the years has transformed lives, affirmed the dignity of every person and moved us closer to liberty and justice for all,” Senator Cory Booker (D–N.J.) tells POZ. “His work on behalf of LGBTQ+ people and on HIV testing and prevention has saved lives. Generations of Newarkers and New Jerseyans owe Gary an immense debt of gratitude for his leadership and light.” Booker should know. The senator’s early career coincided with the birth of AAOGC, which is located in Newark’s Central Ward, the same district Booker once represented on the City Council. Wright’s career as an advocate took off at the height of the AIDS crisis. A Texas native, he moved to New York City in 1986 and soon began working at GMHC, first as a volunteer and later as a staffer. According to Wright, who is HIV negative, his greatest accomplishment is empowering a heavily stigmatized population. “We normalized Black gay identity,” he adds. “We were not ashamed of it. We were purposely gay and Black and out.” Wright was instrumental in New Jersey’s embrace of sexual orientation/gender identity data to ensure successful, more culturally competent health care outcomes for LGBTQ people. “It was a time when the state Department of Health was categorizing transgender women into the population of men who have sex with men (MSM),” Wright explains. “We got the state to separate transgender from MSM.” But, according to Christian Fuscarino, who leads Garden State Equality, New Jersey’s largest LGBTQ organization, Wright’s most valuable contributions are the voices he continues to amplify. “Gary Paul has committed his entire life to service and thus saving countless lives over the decades,” Fuscarino says. “He does the often thankless work of providing lifesaving services to young gay and bisexual men of color, reaching deep into the corners of the most marginalized in the LGBTQ community to ensure that no one is overlooked. Gary Paul is unapologetically Black, and by proudly leading as his true self, he has inspired future generations of Black, queer and trans leaders to be their true selves. He is always paving the way.” Wright says his husband, Peter Oates, a longtime HIV nurse, is his biggest supporter. “Peter is my rock,” Wright adds. “We’ve been together for 33 years. The fact that he was working in HIV and AIDS also ensured we knew each other’s work was valuable and lifesaving. I consider myself very lucky to have a husband like that.” Q
32 POZ JANUARY/FEBRUARY 2024 poz.com
Gary Paul Wright is a longtime AIDS advocate.
MEGAN SENIOR
Enduring Empowerment
Treatment helps prevent the spread of HIV If you're living with HIV, a major goal is to get your viral load to undetectable. This means that there is so little virus in the blood that a lab test can't measure it. Current research shows that taking treatment as prescribed and getting to and staying undetectable prevents the transmission of HIV through sex. This is also known as U=U.
Why U=U matters U=U means undetectable=untransmittable. It helps destigmatize living with HIV, raises awareness that today's medications can be effective, and reminds people of the importance of continuing to take treatment as prescribed. Stay empowered to live a longer and healthier life.
Speak with your healthcare provider It's important to be open and honest with your healthcare provider to find the right treatment for you and your routine. No questions are off limits when you meet with them.
2024 HIV AND AIDS AWARENESS DAYS
Awareness days help educate the general public and specific communities about HIV and AIDS. Display this poster as a reminder of upcoming awareness days, and use the hashtags shown to promote them on social media.
MARCH
FEBRUARY
APRIL
7
10
19
10
National Black HIV/AIDS Awareness Day
National Women and Girls HIV/AIDS Awareness Day
National Native HIV/AIDS Awareness Day
National Youth HIV & AIDS Awareness Day
#NBHAAD According to the Centers for Disease Control and Prevention (CDC), Black people account for 40% of estimated HIV infections, even though they make up only 12% of the U.S. population. NBHAAD helps to raise awareness of HIV testing, prevention and treatment in communities of color.
#NWGHAAD According to the CDC, women made up 18% of new HIV diagnoses in the United States in 2021. This awareness day emphasizes the need for further prevention efforts aimed at women and girls and promotes equity in HIV care and treatment.
MAY
28
18
HIV Is Not a Crime Awareness Day
HIV Vaccine Awareness Day
#HIVisNotaCrime HIV-specific laws are not only outdated, but they also disproportionately impact Black, Latino and LGBTQ people as well as individuals who engage in sex work. This awareness day aims to raise awareness of HIV criminalization laws in the country and amplify the work of those trying to reform them.
JUNE
#NNHAAD Observed on the first day of spring, this day aims to combat HIV-related stigma in Indigenous communities. It also encourages American Indians, Alaska Natives and Native Hawaiians to get tested and promote awareness of HIV in their communities.
#HVAD Led by the National Institute of Allergy and Infectious Diseases, HVAD showcases the progress made in the search for a safe and effective HIV vaccine. It also marks an opportunity to educate communities about the importance of vaccine research.
19
19
National Asian & Pacific Islander HIV/AIDS Awareness Day
Hepatitis Testing Day
#APIMay19 This awareness day presents an opportunity to highlight how HIV uniquely affects Asians and Pacific Islanders. The goal is to promote HIV testing and treatment and encourage conversations about HIV in these communities.
#HepTestingDay Approximately one in five people living with HIV nationwide also have hepatitis C, and people at risk for HIV are also at risk for hepatitis B. Hepatitis Testing Day aims to provide support for those living with viral hepatitis, to increase awareness of the various types of hepatitis and to encourage testing.
AUGUST
#NYHAAD This awareness day was launched to engage young people on the topic of HIV and AIDS. According to the CDC, people ages 13 to 34 accounted for more than half of new U.S. HIV diagnoses in 2021.
18 National Transgender HIV Testing Day
#NTHTD HIV disproportionately affects the transgender community. NTHTD recognizes the importance of routine testing and a continued focus on HIV prevention and treatment among people who are transgender, gender-nonconforming and nonbinary.
reform them.
importance of vaccine research.
hepatitis and to encourage testing.
AUGUST
JUNE 5
20
25
HIV Long-Term Survivors Awareness Day
Southern HIV/AIDS Awareness Day
National Faith HIV/AIDS Awareness Day
#HLTSAD First observed in 2014, this awareness day honors long-term survivors of HIV, highlights the challenges they face and marks an opportunity to advocate for resources to meet their particular needs.
#SHAAD In 2021, more than 50% of new HIV diagnoses were in the South. SHAAD raises awareness of the HIV crisis in the region and marks an opportunity to advocate for resources to address it.
SEPTEMBER
27 National HIV Testing Day
#HIVTestingDay According to the CDC, approximately 13% of people living with HIV don’t know they have the virus. This awareness day serves as a reminder to people of all ages to learn the facts about HIV and get tested for the virus.
(BLACK GROUP, FEATHERS, BOY AND TRANSGENDER SYMBOL) ISTOCK; (FAITH) HIVFAITH.ORG
JULY
#NFHAAD HIV affects people of all faiths across the United States. The goal of NFHAAD, which is observed on the last Sunday in August, is to bring together Muslims, Christians, Jews, Buddhists, Hindus and members of other religions to raise awareness and fight the virus.
9 National African Immigrants and Refugee HIV/AIDS and Hepatitis Awareness Day #NAIRHHADay This awareness day draws national and local attention to the HIV and viral hepatitis needs of African immigrants living in the United States. The goal is to address some of the unique issues that African immigrants face through awareness, education and resources.
18
27
National HIV/AIDS and Aging Awareness Day
National Gay Men’s HIV/AIDS Awareness Day
#HIVandAging According to the CDC, more than half of people living with HIV and AIDS in the United States are ages 50 and older. This awareness day promotes HIV education and encourages HIV testing for all older adults.
#NGMHAAD According to the CDC, gay and bisexual men accounted for 70% of new HIV infections in the United States in 2021. In addition to promoting HIV testing, NGMHAAD is a time to raise awareness of and support dialogue about HIV prevention and treatment and the unique needs of gay and bi men.
21 Zero HIV Stigma Day
#ZeroHIVStigmaDay A joint initiative of NAZ and IAPAC, in collaboration with the Global HIV Collaborative and Fast-Track Cities Institute, this awareness day highlights the negative impacts of HIV-related stigma around the world and promotes ways to fight it.
DECEMBER
OCTOBER 15 National Latinx AIDS Awareness Day #NLAAD According to the CDC, Latinos accounted for 29% of new HIV infections in 2021. NLAAD’s objective is to unite and mobilize the community to promote HIV testing and education.
1 World AIDS Day
#WorldAIDSDay About 39 million people across the globe were living with HIV in 2022, according to UNAIDS. On this awareness day, the world comes together to show solidarity in the fight against HIV, to express support for those living with the virus and to remember those lost to the epidemic.
You can live well with HIV It's important to start HIV treatment as soon as possible and stick with it. Remember to take your treatment as prescribed and stay engaged in care. Taking care of yourself is a great way to help you live well with HIV.
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HIV doesn't have to stop you from being you. Discover helpful tips and support to keep living your authentic life.
Find more helpful information and resources at HelpStopTheVirus.com
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Learn how to look after your health If you are living with HIV, talk to your healthcare provider about treatment options. Help Stop the Virus provides resources and information that can help you stay engaged in your health. Visit HelpStopTheVirus.com
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