Real Health Focus Winter 2022

Page 1

Supplement to Real Health magazine

Faith, Healing and AIDS

Living long term with HIV

Rae Lewis-Thornton

IMPORTANT FACTS FOR BIKTARVY®

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

MOST IMPORTANT INFORMATION ABOUT BIKTARVY

BIKTARVY may cause serious side effects, including:

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

ABOUT BIKTARVY

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

BIKTARVY does not cure HIV-1 or AIDS. HIV-1 is the virus that causes AIDS.

Do NOT take BIKTARVY if you also take a medicine that contains:

` dofetilide

` rifampin

` any other medicines to treat HIV-1

BEFORE TAKING BIKTARVY

Tell your healthcare provider if you:

` Have or have had any kidney or liver problems, including hepatitis infection.

` Have any other health problems.

` Are pregnant or plan to become pregnant. It is not known if BIKTARVY can harm your unborn baby. Tell your healthcare provider if you become pregnant while taking BIKTARVY.

` Are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed. HIV-1 can be passed to the baby in breast milk.

Tell your healthcare provider about all the medicines you take:

` Keep a list that includes all prescription and over-thecounter medicines, antacids, laxatives, vitamins, and herbal supplements, and show it to your healthcare provider and pharmacist.

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

POSSIBLE SIDE EFFECTS OF BIKTARVY

BIKTARVY may cause serious side effects, including: ` Those in the “Most Important Information About BIKTARVY” section.

` Changes in your immune system. Your immune system may get stronger and begin to fight infections that may have been hidden in your body. Tell your healthcare provider if you have any new symptoms after you start taking BIKTARVY.

` Kidney problems, including kidney failure. Your healthcare provider should do blood and urine tests to check your kidneys. If you develop new or worse kidney problems, they may tell you to stop taking BIKTARVY.

` Too much lactic acid in your blood (lactic acidosis), which is a serious but rare medical emergency that can lead to death. Tell your healthcare provider right away if you get these symptoms: weakness or being more tired than usual, unusual muscle pain, being short of breath or fast breathing, stomach pain with nausea and vomiting, cold or blue hands and feet, feel dizzy or lightheaded, or a fast or abnormal heartbeat.

` Severe liver problems, which in rare cases can lead to death. Tell your healthcare provider right away if you get these symptoms: skin or the white part of your eyes turns yellow, dark “tea-colored” urine, light-colored stools, loss of appetite for several days or longer, nausea, or stomach-area pain.

` The most common side effects of BIKTARVY in clinical studies were diarrhea (6%), nausea (6%), and headache (5%). These are not all the possible side effects of BIKTARVY. Tell your healthcare provider right away if you have any new symptoms while taking BIKTARVY.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.FDA.gov/medwatch or call 1-800-FDA-1088.

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

HOW TO TAKE BIKTARVY

Take BIKTARVY 1 time each day with or without food.

GET MORE INFORMATION

` This is only a brief summary of important information about BIKTARVY. Talk to your healthcare provider or pharmacist to learn more.

` Go to BIKTARVY.com or call 1-800-GILEAD-5

` If you need help paying for your medicine, visit BIKTARVY.com for program information.

(bik-TAR-vee)
BIKTARVY, the BIKTARVY Logo, GILEAD, the GILEAD Logo, GSI, and KEEP ASPIRING are trademarks of Gilead Sciences, Inc., or its related companies. Version date: February 2021 © 2022 Gilead Sciences, Inc. All rights reserved. US-BVYC-0008 01/22
Please see Important Facts about BIKTARVY, including important warnings, on the previous page and visit BIKTARVY.com. BIKTARVY® is a complete, 1-pill, once-a-day prescription medicine used to treat HIV-1 in certain adults. BIKTARVY does not cure HIV-1 or AIDS. Ask your healthcare provider if BIKTARVY is right for you. Because HIV doesn’t change who you are. ONE SMALL PILL, ONCE A DAY Pill shown not actual size (15 mm x 8 mm) | Featured patient compensated by Gilead. #1 PRESCRIBED HIV TREATMENT * *Source: IQVIA NPA Weekly, 04/19/2019 through 05/28/2021. Scan to see Dimitri’s story. DIMITRI LIVING WITH HIV SINCE 2018 REAL BIKTARVY PATIENT Because HIV doesn’t who you are. KEEP ASPIRING.

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3 BUZZ

HIV ally Sheryl Lee Ralph wins an Emmy Award; the AIDS Memorial Quilt goes to the South; helping community health centers end HIV

6 Q & A

AIDS as Fact and Fiction: Rasheed Newson discusses his debut novel, which reimagines HIV history.

REACH OUT & CLICK!

8 CARE & TREATMENT

Substance use treatment for HIV?; better access to contraception; coinfection raises heart attack risk; facing higher suicide risk

10 FEATURE

At 60, longtime AIDS activist Rae Lewis-Thornton reflects on living long term with HIV.

At realhealthmag.com, you can read more articles and access exclusive, online-only special reports. Plus, sign up for the Real Health email newsletter to get the latest news on issues relating to Black health!

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EDITORIAL

SMART + STRONG

President: Ian E. Anderson

Editorial Director: Oriol R. Gutierrez Jr. Vice President, Integrated Sales: Diane Anderson

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Real Health Focus is an educational series on specific health topics. The editorial content is independently produced by Smart + Strong.

CONTENTS 2 REAL HEALTH FOCUS WINTER 2022 I realhealthmag.com COVER AND THIS PAGE: (LEWIS-THORTON) KIRSTEN MICCOLI; (COUPLE AND MEDITATION) ISTOCK; (FOOD) SHUTTERSTOCK.COM/RUTH KAY
10
Rae Lewis-Thornton
Editor:
Managing Editor: Jennifer Morton Deputy
Trent Straube Science Editor: Liz Highleyman Copy Chief: Joe Mejía
Art Director: Mark Robinson Production Manager: Michael Halliday

Sheryl Lee Ralph Wins an Emmy Award

The longtime HIV advocate sang during her thank-you speech.

HIV-POSITIVE CHARACTERS AND AIDS TELEVISION DRAMAS MIGHT HAVE been absent from the 74th Emmy Awards, but the HIV community still had reason to cheer: Longtime HIV advocate Sheryl Lee Ralph won the Emmy for Outstanding Supporting Actress in a Comedy Series, and her phenomenal acceptance speech won the night, the internet and our hearts.

The actress, 65, who took home the award for her role as kindergarten teacher Barbara Howard in Abbott Elementary, began her speech by singing—no, belting— lines from the Dianne Reeves song “Endangered Species.”

“I am an endangered species,” Ralph sang, “but I sing no victim’s song. I am a woman, I am an artist and I know where my voice belongs.”

She then stated, enunciating as only a gifted performer could, “To anyone who has ever, ever had a dream and thought your dream wasn’t, wouldn’t, couldn’t come true, I am here to tell you that this is what believing looks like. This is what striving looks like. And don’t you ever, ever give up on you.” This year marked her first Emmy nomination.

Television viewers who have watched Ralph for decades—as matriarch Dee Mitchell in the family sitcom Moesha and Felicia Hollingsworth in season 2 of the cancer-themed comedy One Mississippi, for example—may have been surprised to learn the actress can sing. But not Broadway fans. Ralph originated the role of Deena Jones in the 1983 Dreamgirls (Beyoncé played Jones in the 2006 movie version), for which she was nominated for a Tony Award (Ralph lost to costar Jennifer “And I Am Telling You I’m Not Going” Holliday).

Throughout her career, Ralph, 65, has made the time to champion HIV awareness. In a 2007 profile, “Call Me Miss Ralph,” in our sister publication POZ, she jokingly referred to herself as in the running for “the most fabulous AIDS diva ever to wear a red ribbon.” She told POZ that by the time Dreamgirls closed in 1985, she estimated that one third of the cast and crew had died of AIDS-related illness, including the director, Michael Bennett.

In 1990, she founded The D.I.V.A. (Divinely Inspired Victorious Award) Foundation to fight HIV stigma and raise awareness. And in 2018, Ralph was honored for her AIDS activism with an award at the annual 365 Black Awards presented by McDonald’s. Held during the Essence Music Festival in New Orleans, the awards honored five Black women making a difference in the African-American community.

—Trent Straube

AIDS Memorial Quilt Goes South

Sections of the AIDS Memorial Quilt toured the Southern United States as part of an initiative to honor Black and brown lives lost to HIV and to raise awareness of racial disparities that continue to fuel the epidemic.

The Change the Pattern initiative launched in Jackson, Mississippi, September 28 to October 4, with Quilt displays, educational forums, storytelling, advocacy, panel-making and other free programs. The Change the Pattern display and events then moved to other Southern locations.

The multicity initiative is funded by a $2.4 million grant from Gilead Sciences, which manufactures many HIV medications, in partnership with the National AIDS Memorial, which is the custodian of the Quilt, and the Southern AIDS Coalition.

Eligible organizations received up to $5,000 each to support hosting local quilt-making workshops to ensure that the stories of lost Black and brown lives are captured through newly sewn panels on the Quilt through the Memorial’s Call My Name program.

The events in Jackson included a display of more than 500 handstitched panels, many from the region, which marked the largest display of the Quilt in the state.

Each block of the Quilt measures 12 feet by 12 feet and is made up of eight 3-foot-by 6-foot panels. Roughly the size of a grave, each panel represents someone lost to the epidemic. —TS

realhealthmag.com I WINTER 2022 REAL HEALTH FOCUS 3 BUZZ (RALPH) YOUTUBE/TELEVISION ACADEMY; (QUILT) COURTESY OF NATIONAL AIDS MEMORIAL
The Change the Pattern initiative honors those lost to HIV.

Allowing People With HIV to Enlist

Congress members seek a change to a Department of Defense policy.

TWO IDENTICAL CONGRESSIONAL letters—one signed by six senators; the other by 34 representatives—urge President Joe Biden to direct the Department of Defense (DoD) to allow people with “well-managed” HIV and hepatitis B virus (HBV) to enlist, seek appointment and otherwise serve in the military, according to a press statement from Representative Mike Quigley (D–Ill.).

Quigley led the effort in the House, along with Representatives Sara Jacobs (D–Calif.) and Barbara Lee (D–Calif.). Senators Chris Coons (D–Del.) and Kirsten Gillibrand (D–N.Y.) spearheaded the call to action in the Senate.

“People living with HIV and HBV can manage their condition with as little as one pill a day and are able to lead very full, long lives,” Quigley’s press release states. “Given the advancements in medicine for both HIV and HBV, these viruses do not in and of themselves make an individual less able to serve, and the risk of battlefield transmission is

Out for Delivery

near zero. There is no longer any plausible argument to deny these individuals the ability to serve their country.”

The lawmakers’ letters arrive at the White House after a “landmark victory” court ruling in April 2022 for service members living with HIV and after the DoD in June 2022 updated and modernized its HIV policy.

In the court ruling, a federal judge struck down discriminatory Pentagon policies that discharge and deny promotions to service members living with HIV. The ruling applied to people who contracted HIV while in service; it’s estimated that about 2,000 people in the military have HIV. Currently, people with HIV are not allowed to enlist.

In its June policy update, the DoD clarified that service members whose viral load is undetectable can continue to serve and are deployable. The new policy also allows cadets and midshipmen—young people already on the path to military service—who test

Testing yourself for HIV for free is about to get a lot easier, thanks to the largest HIV self-testing program in U.S. history. The Together TakeMeHome program aims to deliver 1 million rapid HIV tests across the country starting in early 2023.

The federal government, via the Centers for Disease Control and Prevention (CDC), has awarded $8.3 million per year to Together TakeMeHome for its five-year project (for a total of $41.5 million), according to a statement from Emory University, which will oversee the program.

Orders placed on the program’s website will be processed by Amazon, which will deliver the tests in discreet packages, according to the press release. OraSure will provide the tests, which will be available in all 50 states, Washington, DC, and Puerto Rico.

Nearly 40% of new HIV cases are transmitted by people unaware of their positive status, according to the CDC,

positive for HIV to continue their commissioning program.

These recent developments are cited in the letters to Biden.

The military members involved in the HIV lawsuit that led to the overturn of the Pentagon policy had been deemed fit to serve. Thus, they claimed the policy was discriminatory and based on outdated science. The court agreed, adding that the Pentagon’s policy was “unlawful, arbitrary and capricious— and unconstitutional,” in the words of Lambda Legal’s Scott Schoettes. —TS

which estimates that about 1.2 million people in the United States are living with HIV, including 158,500 who don’t know they have it.

Put another way, about one in eight people with HIV are unaware of their status, according to HIV.gov. “Knowledge of status is the gateway to engaging in prevention or treatment services that enable individuals, regardless of their status, to live a long and healthy life,” said Harold J. Phillips, MRP, director of the White House Office of National AIDS Policy, on HIV.gov.

In other words, it’s important to know whether you have HIV. If you’re positive, then you can take medications—daily pills or long-acting injections—that stop disease progression and reduce your viral load. People living with HIV who have an undetectable viral load not only live longer and healthier lives, they also do not transmit HIV sexually, a fact referred to as Undetectable Equals Untransmittable, or U=U. —TS

4 REAL HEALTH FOCUS WINTER 2022 I realhealthmag.com BOTH IMAGES: ISTOCK BUZZ
A new program aims to deliver 1 million free rapid HIV tests.

Helping Community Health Centers End HIV

were awarded by the Health Resources and Services Administration, a division of the Department of Health and Human Services. The funding supports the federal Ending the HIV Epidemic initiative, which aims to reduce new U.S. HIV cases by 75% by 2025 and by 90% by 2030.

The White House also published a federal implementation plan for the National HIV/AIDS Strategy [NHAS], which was updated in 2021. Although the national strategy and the Ending the Epidemic initiative share similar goals, they lay out different paths.

“I hope that this document inspires our private sector, our academic institutions [and] our faith-based partners to really understand what the federal government plans to do,” he added. “The implementation plan is a companion document to the [NHAS]. So [we have] the framework, and then we [have] federal action; now we need the rest of society to come together and activate and accelerate, like President Biden called us to do to end the HIV epidemic.”

Some 64 community health centers will receive a total of more than $20 million in federal funding to expand their efforts to prevent, test for and treat HIV. The funds

“Our National HIV/AIDS Strategy included goals and objectives and some strategies for how we can end the HIV epidemic in the United States, but the implementation plan captures some of the major activities that our federal partners will engage in up to the year 2025 to help move us forward,” explained Harold J. Phillips, MRP, the director of the White House Office of National AIDS Policy, in an HIV.gov video.

Black HIV Care in the South

The national strategy, which builds on previous ones, was updated on World AIDS Day, December 1, 2021, and offers a road map for fighting HIV from 2022 to 2025. The first one was launched in 2010 by the Obama administration.

According to HIV.gov, centers that receive funding “will leverage it to expand access to medication to prevent HIV (including pre-exposure prophylaxis, or PrEP, and related services), connect people to care and ensure care services are well coordinated.” —TS

For several years now, national HIV  rates have been highest in the South, notably among Black Americans. A new $4.5 million effort funded by drugmaker Gilead Sciences aims to address HIV health inequities in the region.

To improve HIV care among Black Americans in the South, Gilead has teamed up with the Satcher Health Leadership Institute at the Morehouse School of Medicine in Atlanta and the Center for Minority Health and Health Disparities Research and Education at Xavier University of Louisiana’s College of Pharmacy.

The funding lasts for three years and aims to improve HIV care for Black communities in three cities: Baton Rouge and New Orleans in Louisiana and Atlanta, Georgia.

According to the Gilead press release, the partnership aims to close crucial gaps in care by:

■ Increasing understanding of the impact of COVID-19 on the health care delivery system in the Black community;

■ Realigning HIV services to reflect the impact of the COVID-19 pandemic;

■ Providing training focused on culturally appropriate HIV care, inclusive of stigma-reducing strategies; and

■ Increasing access to and utilization of culturally appropriate care for Black people impacted by the HIV epidemic.

“We are committed to investing in organizations, community leaders and experts working to address the underlying determinants of health outcomes,” said Rashad Burgess, Gilead’s vice president of advancing health and Black equity, in the statement.

“Though the COVID-19 pandemic was a setback to the American health care system overall, we must bring to the forefront disproportionately impacted communities,” added Daniel E. Dawes, JD, executive director of the Satcher Health Leadership

Institute at the Morehouse School of Medicine and author of The Political Determinants of Health.

“Xavier is a top producer of African Americans with a doctor of pharmacy degree, and we instill in our graduates the mission of Xavier and the desire to serve the underserved with an effort to mitigate health disparities for underrepresented communities,” said Kathleen Kennedy, PharmD, the dean of Xavier’s College of Pharmacy. —TS

(PHILLIPS) YOUTUBE/HIV.GOV; (MAP) ISTOCK
A $4.5 million joint effort aims to address health inequities in three cities.
realhealthmag.com I WINTER 2022 REAL HEALTH FOCUS 5
The U.S. health department releases more than $20 million in new funding.
Harold J. Phillips

AIDS as Fact and Fiction

In Rasheed Newson’s debut novel, a Black gay activist comes of age in 1980s New York City.

The way Rasheed Newson tells it in his debut novel, My Government Means to Kill Me, set in 1980s New York City, the AIDS activist group ACT UP didn’t spring into existence after a rousing call to action by writer Larry Kramer during a speech at the LGBT Community Center. Nope. That narrative, commonly recounted today, amounts to a myth, a “lie [that] has a romantic sweep to it, if one finds beauty in the magic of accidents and perfect timing.” Instead, Kramer enlisted the help of civil rights leader Dorothy Cotton, who worked with Martin Luther King Jr., and the two secretly trained an AIDS army, going so far as to hire goons to rough up wannabe activists to see who could take the impending abuse.

Did that really happen? Hardly. But the novel is a work of historical fiction. Many of the people and events are real, but others are fabricated. It’s the clever tale of 18-year-old Trey, a Black gay man from the Midwest who comes of age in the heady world of HIV activism in New York City.

To learn what’s fact versus fiction in his book, we spoke with Newson, 43, as the married father of two was prepping for the new season of Bel-Air. He’s the showrunner and executive producer for the TV series (a dramatic reimagining of the ’90s sitcom The Fresh Prince of Bel-Air). He has also worked on the series Narcos, Shooter and The Chi. Our conversation has been edited for clarity and brevity. —Trent Straube

When did you first learn about HIV?

In high school, in 1994, a teacher brought in a man who was HIV positive to speak to us. I was 15. It was a revelation. He has to have been the first person I ever knew who openly had HIV. I remember him being led into the room because at that point his vision was such that he could only see us as a shape or silhouette. Incredibly powerful.

Did you come out at a young age?

I was not terribly brave [about coming out early], but I was also not fooling anyone. I never had a serious girlfriend and was on the down low dating other boys my age. When I did come out after college, I don’t remember anybody gasping.

You grew up in Indianapolis (like the novel’s protagonist, Trey). You went to college at Georgetown University in Washington, DC, and you now live in Pasadena, California. What drew you to writing a story set in New York?

An uncle, who is gay and only 14 years older than me, lived in New York City. Ever since I was 16, I would fly out there once or twice a year to see Broadway shows and hang out. We’d tell my parents that [my uncle] was taking the day off, but he was a lawyer so wasn’t missing work. [I explored on my own] and loved it. Just to show you where I was in my life, of all the things you could do, I once figured out

6 REAL HEALTH FOCUS WINTER 2022 I realhealthmag.com Q & A
Clockwise from far left: the cover of the book, a work of historical fiction that weaves in real-life civil rights activists Bayard Rustin and Dorothy Cotton; AIDS activist Larry Kramer; and an ACT UP protest in New York City (RUSTIN) WIKIMEDIA/LIBRARY OF CONGRESS; (COTTON) YOUTUBE/ LIBRARY OF CONGRESS; (KRAMER) ETHAN HILL; (DEMONSTRATION) COURTESY OF PETER STALEY

how to take the subway to Brooklyn where they filmed [the soap opera] Another World so I could stand outside and see, like, Linda Dano walk in.

Were you involved in AIDS activism?

I volunteered at Grandma’s House [a home for foster care children living with HIV]. I’d help them with homework and be a playmate. Teachers and students were afraid of them, so our job was: I’m gonna love you like mad, and somebody’s going to think you’re the best thing ever.

In my nonprofit life, I worked for the Coalition for Juvenile Justice. In college, we’d protest against the death penalty. [That activism was] very much like the AIDS activism that I wanted to convey in the book: Yes, the subject is heavy, but protesting wasn’t somber. We’d joke around, and somebody cute would be there, and you’d get their number. You’d get to be friends with these people. That’s the vibe I want to remind everyone of.

Your novel melds AIDS activism with civil rights history. What’s the link?

By the time you get to the ’80s, you’ve got people who’ve been in the civil rights movement, the women’s rights movement, the anti–Vietnam War movement. You have older people who are like, “I know who to call to get the Times interested in this story” or “This is how systems work and how change is brought about.” And then you have young people who are willing to throw their bodies into the movement and bring passion but are impatient. I think there has to be that push-pull. I’m all right with the clash and the messiness.

Many novelists play with facts to get at underlying truths or to streamline a story. You include footnotes that explain historical people and events, but do you worry that readers might not know what’s fabricated?

Oh, this is historical fiction. As long as I gave you some indication of where you could follow up on the facts, I thought it was fair game. And in a few footnotes, I’m telling you I’m making this up. I’m trying to be openhanded about when something is real and when it’s not. But all the other [nonfiction] material is still out there for the taking. And at the end of the book, I give a reading list, like Sarah

Schulman’s Let the Record Show: A Political History of ACT UP New York

And I’m hoping that [my fictionalized version] brings in younger people, that people who lived through [1980s AIDS activism] can get a sense of nostalgia and that this rings authentic, even if it’s not factually true.

Let’s clarify some details. Trey befriends civil rights icon Bayard Rustin, who holds court at Mt. Morris Baths, a reallife bathhouse that catered to Black gay men. What do we have there?

The facts cater to Rustin’s demographic. I know Rustin was [arrested and convicted] in Pasadena, California, in 1953, for sexual activity with two men in a parked car. What I took from that was: Oh, right, you know a lot of things about Rustin, but he is a man, a gay man, with sexual desires at a time when those desires were criminalized. So I thought, Let’s continue the idea that he was still sexually active.

Kramer’s apartment at the beginning of ACT UP organizing, but what happened there? That’s my invention. I did a lot of research, and almost everything was possible with ACT UP because each branch did its own thing. What I encourage other people to do—whether it’s to learn about Kramer or Rustin or Dorothy Cotton—is go online because there are hours and hours of video and audio of them talking about their lives.

Larry Kramer was alive when I started this book [he died May 2020], and a friend asked if I wanted to talk with him. I said, “I absolutely do not want to talk with Larry Kramer. I’m frightened of Larry Kramer.” But if I did, then it would get in my head in the wrong way, and I’d be stuck with whatever he tells me.

Another main character is Angie, who runs an AIDS hospice that mostly caters to dying Black gay men. Is she based on a real person?

Did Dorothy Cotton and Larry Kramer work together to train AIDS activists?

Not that I know of. But she was for gay rights and marriage equality. And she had done trainings—that really was her talent.

The idea of those lunch counter trainings back in the day [to prepare for the 1960 nonviolent sit-ins to protest segregated lunch counters]—they knew they’d have hot coffee poured on them and people would get in their faces and scream, so without trying to do real harm [the trainings aimed] to simulate the chaos and instill how to stay calm and self-possessed.

Did ACT UP members subject themselves to these physical trainings at Kramer’s apartment?

I know there were people at Larry

She’s a composite of all the lesbian sisters who stepped up during the crisis and who disappear from our stories of, like, five white guys holding hands on the beach facing AIDS. I’m not saying that didn’t happen, but there are other stories. Ultimately, this is the story of an enduring friendship between a femme gay Black man and this unapologetic butch lesbian, and I was happy with that.

Do you consider yourself an activist? I was much closer to it when I was in my 20s and could go to protests. Now I consider myself an activist in how I’m raising my children. I certainly use my dollars and donations for liberal causes. And I consider writing this book an act of activism.

realhealthmag.com I WINTER 2022 REAL HEALTH FOCUS 7
“I’m hoping this rings authentic, even if it’s not factually true.”
COURTESY OF RASHEED NEWSON/CHRISTOPHER MARRS
Rasheed Newson

Facing Higher Suicide Risk

A new study is the first to look at suicide risk among HIV-positive youth.

ADOLESCENTS AND YOUNG ADULTS

who acquired HIV at birth are more likely to attempt suicide than their HIV-negative peers, according to the first study dedicated to evaluating suicide risk among youth living with HIV. Those facing stigma and other hardships are even more likely to try to take their lives.

The circumstances for young people with HIV are part of a larger problem of youth suicide, which has ballooned in recent decades. Suicide is now the second most common killer of adolescents and young adults, claiming the lives of more than 1 in 10,000 each year.

Though suicide can affect anyone, certain experiences can heighten the risk. Among young people with HIV, feeling stigmatized about their status can be associated with suicide attempts. Other hardships, like dealing with mental illness, pregnancy, a history of arrest, city stress and other negative life experiences, are also associated with higher rates of suicide attempts in this group.

The systemic racism that leads Black and Latino youth to disproportionately face discrimination, income inequality, traumatic life events, city stress and racial disparities can also lead to higher suicide rates for young people of color living with HIV.

LGBTQ youth who acquired HIV at birth also have higher rates of suicide than straight and cisgender peers their age. This is in line with heightened suicide risk among queer young adults who do not have HIV. Almost half of LGBTQ youth seriously considered suicide during the past year, according to a national survey by The Trevor Project.

On the other hand, young people living with HIV are less likely to attempt suicide if they feel a strong sense of family and self-esteem, the research shows. Developing such support could be a key area to focus on in future interventions.

Led by Philip Kreniske, PhD, of the HIV Center for Clinical and Behavioral Studies at the New York State Psychiatric Institute and Columbia University, the research is the first of its kind and shows the need for further investigation into mental health among young people living with HIV. —Shane Burke

Substance Use Treatment for HIV?

tial proportion of people who use drugs are living with HIV. But this population faces barriers that can make it difficult to start and stay on effective antiretroviral therapy and achieve viral suppression, including unstable schedules, stigma, poverty, homelessness and incarceration.

overdose death and acquisition of HIV and hepatitis C; for those already living with HIV, OAT may improve engagement with care.

People who receive opioid substitution therapy to manage drug addiction are more likely to be on antiretroviral treatment and achieve an undetectable HIV viral load, according to study findings published in the journal AIDS.

“These findings are encouraging and support calls for greater integration of OAT [opioid agonist treatment] and HIV services as well as for interventions to reach people with HIV not on OAT to maximize the clinical and community benefits of antiretroviral therapy,” wrote study authors Stephen Juwono, Eugenia Socías, MD, and colleagues from the British Columbia Centre on Substance Use.

HIV is easily transmitted via shared drug injection equipment, and a substan-

OAT, which uses medications such as methadone or buprenorphine to prevent withdrawal symptoms and ease cravings for heroin and other opioids, can help people reduce or stop substance use. OAT can lower the risk of

Juwono’s team assessed the impact of OAT on progression through the HIV cascade of care for people who use opioids in Vancouver. The cascade of care involves linkage to care, initiation of antiretroviral therapy, retention in care, ongoing adherence to treatment and, finally, achieving and maintaining an undetectable viral load, which prevents disease progression and HIV transmission.

After adjusting for other factors, people on OAT were nearly four times more likely to start antiretrovirals, about three times more likely to adhere to treatment and more than twice as likely to achieve viral suppression.

“This study found a high level of OAT engagement among people with HIV using unregulated opioids and that OAT engagement resulted in significantly increased progression through some of the higher steps of the HIV cascade,” wrote the study authors. —Liz Highleyman

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Opioid substitution therapy may improve adherence to HIV medications.

Coinfection Raises Heart Attack Risk

(blockage of the arteries that supply the heart muscle), heart failure and heart attacks (myocardial infarction).

HIV and HCV share some common transmission routes, and many people are living with both viruses (known as coinfection). Hep C can now be easily cured with direct-acting antivirals, but a substantial proportion of people with HCV do not know their status and have not gotten treatment.

People living with HIV face a rising likelihood of heart attacks as they age, and this risk is magnified if they also have hepatitis C virus (HCV), according to new research published in the Journal of the American Heart Association. Managing traditional cardiovascular risk factors, keeping HIV under control and getting treated for HCV can reduce the risk.

As people with HIV live longer thanks to effective treatment, they are more likely to develop age-related conditions, such as cardiovascular disease (CVD). A large body of research has shown that HIV-positive people are at greater risk for a variety of cardiovascular problems, including atherosclerosis (buildup of cholesterol and other material in the arteries), coronary artery disease

Hep C is also associated with cardiovascular problems, but the combined impact of HIV and HCV is not well understood. Keri Althoff, PhD, MPH, of Johns Hopkins Bloomberg School of Public Health, and colleagues aimed to identify whether HIV/HCV coinfection increases the risk of type 1 myocardial infarction—the type of heart attack caused by coronary artery disease— and whether the risk differs by age.

“Due in part to the inflammation from the chronic immune activation of two viral infections, we hypothesized that people with HIV and hepatitis C would have a higher risk of heart attack as they aged compared to those with HIV alone,” Althoff said in an American Heart Association news release.

Better Access to Contraception

Many women with HIV don’t use birth control.

contraception options are needed in HIV clinics,” study authors Manasa Bhatta, of Vanderbilt University, and colleagues concluded.

Women make up nearly a quarter of people living with HIV in the United States and accounted for 19% of new HIV diagnoses in 2019. A majority of newly diagnosed women are of reproductive age, but previous research has shown that contraception use among women with HIV is low, and more than half of pregnancies are unintended. Unplanned pregnancy is associated with poor HIV and mental health outcomes, the researchers noted as background.

In addition to taking HIV and hep C treatment, people aging with HIV can reduce their risk for heart disease by quitting smoking, eating a well-balanced diet, exercising, maintaining a healthy weight and, if appropriate, using medications such as statins (currently being studied in the REPRIEVE trial). Regular checkups can identify warning signs of heart problems at an earlier stage, when they are easier to manage. —LH

A majority of women receiving care at an HIV clinic in Nashville did not use any form of contraception, and pregnancy rates were high, according to a study published in Open Forum Infectious Diseases.

These findings suggest that “continued efforts to ensure access to effective

What’s more, women who don’t plan their pregnancies may miss out on appropriate prenatal care to prevent mother-to-child HIV transmission.

Bhatta’s team analyzed contraception use among women who received care at the Vanderbilt Comprehensive Care Center in Nashville between 1998 and 2018. The clinic provides primary and

specialty care for people living with HIV, including screening for sexually transmitted infections and cervical cancer, family planning services and prenatal care. For most women, this serves as their primary care clinic.

The study authors suggested that several factors may contribute to this low contraception use, including hesitancy to discuss family planning—possibly reflecting the fact that HIV-positive women were previously often advised to use permanent contraception methods.

Concerns about using antiretrovirals and hormonal contraception together may also contribute to hesitancy among patients and providers, they added. However, HIV treatment guidelines from the Department of Health and Human Services state that all HIV-positive women who are sexually active and don’t desire pregnancy should be offered contraception and can use all available methods after consideration of potential drug interactions.

—LH

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People with both HIV and hepatitis C are at greater risk as they age.
Longtime AIDS activist Rae Lewis-Thornton published her new memoir, Unprotected, this year.

Faith, Healing and AIDS

AT 60, RAE LEWIS-THORNTON REFLECTS ON LIVING LONG TERM WITH HIV.

From an early age, Rae Lewis-Thornton has faced adversity. Her childhood was far from perfect. Born to parents who used drugs, she endured abuse and experienced trauma. But Lewis-Thornton never stopped looking for the light at the end of the tunnel—even after she tested positive for HIV in 1987.

“By the time I was diagnosed with HIV, I had lived 10 lifetimes,” says Lewis-Thornton, a 60-year-old author and HIV advocate from Chicago. “But I had resilience. I kept looking for a better way. I thought something was wrong with me, but I never gave up.”

Lewis-Thornton was a 24-year-old political organizer in Washington, DC,

when she was diagnosed. She felt as though she had finally gotten her life together and was following her dreams when suddenly everything changed.

In response to a blood shortage, in 1987, Lewis-Thornton organized a blood drive at her job. About a month after donating blood, she received a

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letter from the American Red Cross informing her that something was amiss and asking her to come in. That’s when she learned that she was HIV positive.

“They didn’t know what to tell you back then,” she says. “The woman kept saying ‘You don’t have AIDS. You only have HIV, and you may never get AIDS.’”

So Lewis-Thornton left the Red Cross building believing that her condition would never progress. “I remember saying, ‘Lord, I can handle HIV, but don’t ever let me get AIDS,’” she recalls.

Lewis-Thornton didn’t disclose her status to many people because she was working in politics and didn’t want it to affect her career. But then she moved back to Chicago, where her health deteriorated over time. It started with yeast infections that she believed were connected to her HIV.

“It was like every time I think I’m on the right path, I get knocked back down,” she says.

She had a booming career working on political campaigns and had served as the national youth director for the Reverend Jesse Jackson’s second presidential campaign in 1988. She had graduated from college and was earning her master’s degree. She was two classes shy of graduation when life took another turn.

Her HIV had progressed to AIDS, which back then often meant a life expectancy of 18 months. That’s when she started to tell more people about her condition. She felt that she needed to prepare to say goodbye to her loved ones.

“There’s an African proverb that says, ‘He who conceals his disease cannot expect to be cured,’” LewisThornton explains. “I latched onto it. I told friends I was dying so they could prepare for my death. Then came the public speaking.”

In the early 1990s, Lewis-Thornton started taking azidothymidine (AZT), the first approved HIV drug. She took it as a single therapy for almost three years. But, like many people, she experienced side effects. LewisThornton could barely hold up her

body and felt nauseous all the time.

“I started to lose weight,” she says. “I had wasting syndrome really bad. I was tired all the time, but I never stopped taking the medicine because it was the only hope I had for life.”

Then, in 1996, she started taking Norvir (ritonavir), one of a new class of HIV drugs called protease inhibitors that had just become available. She had to take 12 pills twice a day.

The side effects were almost unbearable,butshekeptupherregimenbecause she knew she had to do her part to live as long as she could. Her doctor eventually prescribed Crixivan (saquinavir),

“I didn’t stop medicine on my own,” Lewis-Thornton says. “I didn’t miss doses. When the medicine had reached a point where I couldn’t tolerate it anymore, [my doctor] would work something else out for me. We were partners in my health care.”

When news of Lewis-Thornton’s condition spread in Chicago, someone reached out to her requesting that she speak at a local school about living with AIDS. That two-day speaking engagement changed her life.

“When I walked into the room [on the second day], it was jam-packed,”

THE TIME

DIAGNOSED

HIV,

another protease inhibitor. She took six pills two times a day and never felt sick.

“I’ve taken just about every class in the first generation of HIV medicines,” she says. “As it stands today, I’ve taken about 20 different HIV meds.”

Even though she also took medication to prevent opportunistic infections, she had three bouts of pneumocystis pneumonia (PCP), a serious infection that affects the lungs.

These experiences taught LewisThornton the importance of early diagnosis and adherence to medication, especially now that HIV treatment is much better. She also explains that she had a great relationship with her doctor, who fought for her when she couldn’t fight for herself.

she recalls. “Young people were sitting on the floor. Those who had come the day before wanted to come again.”

A young girl in the audience told Lewis-Thornton that God was using her and that she shouldn’t stop speaking. Lewis-Thornton couldn’t shake what the girl said. What’s more, she received many letters of support from other young people. As a result, she quit her job working on a mayoral campaign. She has been sharing her story with the public ever since.

In 1994, Lewis-Thornton made history when she appeared on the December cover of Essence, a national magazine for African Americans. As she says, “It changed the face of AIDS for Black women in America.”

12 REAL HEALTH FOCUS WINTER 2022 I realhealthmag.com
“BY
I WAS
WITH
I HAD LIVED 10 LIFETIMES. I NEVER GAVE UP.”

During the early days of the HIV epidemic, women were often overlooked and underrepresented. Lewis-Thornton explains that trying to navigate AIDS as a woman was hard enough. As a Black woman, she also felt especially stigmatized for having HIV.

“The Essence cover was a landmark for Black people,” she says. “It was a culture changer. Women still bring me that article in mint condition and tell me, ‘It changed my life.’”

Lewis-Thornton continued to educate people about HIV as an on-air contributing editor for the local CBS station. In 1995, she reported an eight-part series titled Living with AIDS. It covered topics such as AIDS in the workplace, women with AIDS and the physical effects of AIDS. The series was a huge success and earned Lewis-Thornton an Emmy Award.

“Each night we shared [episodes], I sat anchor,” she recalls. “We had a phone bank. An AIDS organization came in, and we got a ton of phone calls that night. It was like an AIDS hotline.”

In the early 2000s, Lewis-Thornton earned a master of divinity degree after attending seminary. She was about to start a PhD program, but she kept getting sick. Lewis-Thornton soon learned that she had drug-resistant herpes. She couldn’t fight it without IV medication. That meant she was constantly in and out of the hospital.

In 2003, the Food and Drug Administration approved Fuzeon (enfuvirtide), which works against drug-resistant HIV. Lewis-Thornton’s doctor prescribed her the injectable medication. She injected it into her belly twice a day.

“It was one of the first in its class, and it was a game changer,” she says. “It was also one of the most difficult medications that I’ve ever had to take. The moment you inject it, a nodule starts to rise. It could be as small as a dime or as big as the bottom of a Coke bottle.”

What’s worse, she says, is that you couldn’t reinject into a nodule. She describes having up to 12 painful nodules on her belly on any given day.

But all those trials and complications got Lewis-Thornton where she is today. Her viral load is undetectable,

and her health has, for the most part, been good, she says. As someone aging with the virus, she now worries about the long-term impact of HIV. The drug-resistant herpes still comes and goes. What’s more, she has osteoporosis and is currently on medication to treat it because both HIV and its treatment can harm the bones. She’s also on medication for high cholesterol, a condition she attributes to HIV meds.

Because of her complex treatment history,Lewis-Thorntonisn’tonasinglepill regimen. She takes four different HIV medications, for a total of eight pills a day. “I’m trying to figure out how do I live healthy and whole for as long as I got,” Lewis-Thornton says. “I never thought I would live to see 60.”

But she isn’t just thinking about her physical health. Lewis-Thornton has worked to better her mental health for decades. She’s been in therapy for 25 years. One of her goals is to unpack and address the trauma she’s endured in her life. She also adds that depression affects people living with HIV.

“I don’t skip my therapy sessions,” she says. “I struggle with depression, and I’m intuitive. I know when I’m about to hit the bottom. So I’ll say to my therapist, ‘I’m not good right now.’”

Lewis-Thornton especially relied on her therapist and psychiatrist as she wrote her new memoir, Unprotected, which was released in May 2022 and has a foreword by the Emmy-winning actress (and Lewis-Thornton’s longtime friend) Sheryl Lee Ralph. The book caused Lewis-Thornton to relive a lot of trauma and triggered her to the point that she had to stop writing for a month.

But she also finds ways besides professional help to ease her mind. She likes crafting, beading and knitting. “I use my hands as my kind of mindfulness work,” she says. In fact, Lewis-Thornton dreams of opening a crafting center for women to give them a safe space to deal with their trauma and anxiety.

“Trauma is important [to deal with], because little girls with low self-esteem grow up to be women with low self-esteem, and that puts us at risk for HIV,” she says. “There’s a lot

of soul work that needs to be done.”

She believes that other possibilities must be considered to help the United States get to zero new HIV cases. As she puts it, “Addressing trauma isn’t the whole ball game, but it’s at least a pitch.”

Publishing Unprotected has allowed her to extend a hand to those who may need it most. She hopes to write another book that will show readers how she’s healed from everything she’s been through. But for now, she invites people to see her authenticity and vulnerability in this memoir.

“I show you what trauma looks like andhowIsurvived,”shesays.“Surviving is not healing. It’s taken years to deconstruct what people told me I was and who they made me to be to get to the place God created me to be.”

Through it all, Lewis-Thornton has remained a woman of faith. She has always believed that God has a plan for her. She looks back on the moments in her life when God placed what she calls “North Stars” in her circle to give her a “reprieve from the ugly.”

Although she has used her voice to spread HIV awareness within the church, Lewis-Thornton has more work to do within the faith community. She wants to earn a doctorate in ministry and use her book as the foundation for a dissertation focusing on trauma in the church, specifically how Black churches respond to trauma in general and to trauma among Black women churchgoers in particular.

“I’m going to keep using my voice and doing it in my authentic [way],” she says. “I’m still who God ordained me to be in this space, and I’m going to be that person until the day I die.”

Her work to help others will continue. But Lewis-Thornton also has dreams for her own life. She wants to buy a house—one where she can wake up in the morning, step outside with her tea and listen to nature. She wants a place to call her own.

“Beyond that, I just want to live and see what the end is going to be,” LewisThornton says, “because God always has a next, and sometimes the surprises are just mind-blowing.” ■

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