POZ September 2018

A SMART+STRONG PUBLICATION SEPTEMBER 2018 POZ.COM $3.99

H E A L T H ,

L I F E

Grand Parents Raising the children of parents lost to AIDS Nora Young with grandsons Jordan (above) and Jason

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What is BIKTARVY®?

BIKTARVY is a complete, 1-pill, once-a-day prescription medicine used to treat HIV-1 in adults. 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.

IMPORTANT SAFETY INFORMATION

What is the most important information I should know about BIKTARVY? BIKTARVY may cause serious side effects: } Worsening of hepatitis B (HBV) infection.

If you have both HIV-1 and HBV and stop taking BIKTARVY, your HBV may suddenly get worse. Do not stop taking BIKTARVY without first talking to your healthcare provider, as they will need to monitor your health.

Who should not take BIKTARVY? Do not take BIKTARVY if you take: } dofetilide } rifampin } any other medicines to treat HIV-1

What are the other possible side effects of BIKTARVY? Serious side effects of BIKTARVY may also include: } Changes in your immune system. Your immune system may get stronger and begin to fight infections. 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 (5%), and headache (5%). Tell your healthcare provider if you have any side effects that bother you or don’t go away.

What should I tell my healthcare provider before taking BIKTARVY? } All your health problems. Be sure to tell your healthcare provider if you have or have had any kidney or liver problems, including hepatitis virus infection. } All the medicines you take, including prescription and over-the-counter medicines, antacids, laxatives, vitamins, and herbal supplements. BIKTARVY and other medicines may affect each other. Keep a list of all your medicines and show it to your healthcare provider and pharmacist, and ask if it is safe to take BIKTARVY with all of your other medicines. } If you 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. } If you are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed. HIV-1 can be passed to the baby in breast milk.

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.

Ask your healthcare provider if BIKTARVY is right for you.

Please see Important Facts about BIKTARVY, including important warnings, on the following page.

BVYC0047_BIKTARVY_A_7-875x10-5_POZ_KeepPushing2_r1v2jl.indd 2-3 PZA496026A.indd 1

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Get HIV support by downloading a free app at MyDailyCharge.com

KEEP PUSHING.

Because HIV doesn’t change who you are.

BIKTARVY is a 1-pill, once-a-day complete HIV-1 treatment for adults who are either new to treatment or whose healthcare provider determines they can replace their current HIV-1 medicines with BIKTARVY.

BIKTARVY does not cure HIV-1 or AIDS. BIKTARVY.COM

PZA496026B.indd 1

7/3/18 1:13 PM 7/19/18 12:31 PM

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

(bik-TAR-vee) MOST IMPORTANT INFORMATION ABOUT BIKTARVY BIKTARVY may cause serious side effects, including: • Worsening of hepatitis B (HBV) infection. 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.

ABOUT BIKTARVY BIKTARVY is a complete, 1-pill, once-a-day prescription medicine used to treat HIV-1 in adults.

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 all your medical conditions, including if you: • Have or have had any kidney or liver problems, including hepatitis infection.

• Are pregnant or plan to become pregnant.

• Are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed if you have HIV-1 because of the risk of passing HIV-1 to your baby.

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.

• Ask your healthcare provider or pharmacist about medicines that interact with BIKTARVY.

POSSIBLE SIDE EFFECTS OF BIKTARVY BIKTARVY can cause serious side effects, including: • Those in the “Most Important Information About BIKTARVY” section.

• Changes in your immune system.

• New or worse kidney problems, including kidney failure.

• 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 (5%), 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. Your healthcare provider will need to do tests to monitor your health before and during treatment with BIKTARVY.

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

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

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

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

BIKTARVY, the BIKTARVY Logo, DAILY CHARGE, the DAILY CHARGE Logo, LOVE WHAT’S INSIDE, GILEAD, and the GILEAD Logo are trademarks of Gilead Sciences, Inc., or its related companies.

Version date: February 2018 © 2018 Gilead Sciences, Inc. All rights reserved. BYVC0047 06/18

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ESA

CONTENTS

EXCLUSIVELY ON

POZ.COM

Lillibeth Gonzalez got educated so she could survive HIV. Today, she helps others do the same.

#ADVOCACY MAKE A DIFFERENCE Fighting against HIV/AIDS has always been a struggle. Much work remains to be done to achieve the end of the epidemic.

POZ encourages you to get involved in advocacy. Go to poz.com/advocacy for the latest related news and to learn how you can make a difference in the fight.

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POZ BLOGS

COVER: SAVERIO TRUGLIA; THIS PAGE: (GONZALEZ) LOLA FLASH; (GAVEL/BOOKS AND MEGAPHONE) ISTOCK; (SPEECH BUBBLES) THINKSTOCK

PERSONAL PERSPECTIVES Our roster of bloggers spans the diversity of the HIV/AIDS epidemic. 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.

Find hope and inspiration from others.

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POZ OPINIONS COMMENTARY ON HIV/AIDS 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.

30 GRAND PARENTS Raising the children of parents lost to AIDS. BY DARYL HANNAH 38 LIFE BALL 2018 The annual fundraiser commemorates its 25th anniversary. BY ORIOL R. GUTIERREZ JR. AND CAMERON GORMAN

4 FROM THE EDITOR I’m Still Standing

the epidemic in “As We Mark 37 Years of HIV, We Can End the Epidemic. Will We?”

6 POZ Q+A

18 SPOTLIGHT The latest buzz on @theaidsmemorial

POZ DIGITAL

Esther McGowan, executive director of Visual AIDS, on the group’s renewed focus as it marks 30 years of using art to fight the epidemic

READ THE PRINT MAGAZINE ON YOUR COMPUTER OR TABLET

8 POZ PLANET

24 CARE AND TREATMENT

Two new groups aim to help long-term survivors socialize and beat isolation • HIV history is kept alive in two new books and a report • the art of fighting unjust HIV crime laws • a relaunched CDC campaign takes on HIV stigma

Cancer burden to shift • HIV treatment halts damage to brain • how well do docs navigate conflicting HIV and hep C meds?

• FDA OKs PrEP for adolescents

16 VOICES

Go to poz.com/digital to view the current issue and the entire Smart + Strong digital library.

Blogger and activist Mark S. King reflects on responses to his earlier essay about the 7,000 people who die each year of AIDS-related causes, and AIDS United policy fellow Ronald Johnson, who recently turned 70, takes a look back at

23 EVERYDAY Milestones in the epidemic

29 RESEARCH NOTES an antibody PrEP • integrase inhibitors and adverse drug reactions • gene-editing update • HIV-related racial disparities

44 POZ HEROES Long-term survivor Lillibeth Gonzalez overcame addiction and domestic violence.

Now she empowers others living with HIV.

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, 212 West 35th Street, 8th Floor, New York, NY 10001. Periodicals postage paid at New York, NY, and additional mailing offices. Issue No. 230. POSTMASTER: Send address changes to POZ, 212 West 35th Street, 8th Floor, New York, NY 10001. Copyright © 2018 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.

FROM THE EDITOR

I’m Still Standing

EDITOR-IN-CHIEF

ORIOL R. GUTIERREZ JR. MANAGING EDITOR

JENNIFER MORTON DEPUTY EDITOR

TRENT STRAUBE SENIOR EDITOR

KATE FERGUSON-WATSON EDITOR-AT-LARGE

BENJAMIN RYAN

4 POZ SEPTEMBER 2018 poz.com

COPY CHIEF

JOE MEJÍA EDITORIAL ASSISTANT

ALICIA GREEN INTERN

CAMERON GORMAN

wanted to compare the experience with how it used to be in the early years of the epidemic. There are many ways to tell a story, of course, but I thought a personal touch for this story was in order. It just so happens that POZ contributing writer Daryl Hannah was the right person for this job. Go to page 30 to read more.

Aging with HIV has been a privilege for me. After all, I didn’t expect to get old after testing HIV positive in 1992. That was before effective treatment. I was 22 years old, so my expectation was to die before my 30th birthday.

I’m grateful that didn’t happen. I may even live long enough to see a cure. I never cease to be amazed at the progress—and too often the lack of progress—we’ve made.

Lillibeth Gonzalez also tested HIV positive in 1992. From there, however, apart from dealing with the same challenges all people living with HIV have to overcome, the similarities in our journeys take decidedly different paths. Lillibeth has faced extraordinary obstacles in her life, which have only made her stronger and more determined to make a difference. Go to page 44 to read more.

As we age with the virus, so, too, do our HIV-related institutions. Visual AIDS, perhaps best known for creating the red ribbon, has evolved in how it helps to fight the virus. Go to pages 6 and 13 to read about its latest efforts.

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

(GUTIERREZ) JOAN LOBIS BROWN; (ILLUSTRATION) ISTOCK

I

WAS PLEASED TO SEE THE mostly positive responses to an essay POZ published by blogger, author and activist Mark S. King.

“The Truth About the 7,000” ran in the April/May 2018 print issue.

The essay got thousands of Facebook likes as well as numerous comments on POZ.com and throughout social media.

The title of the essay refers to the nearly 7,000 AIDS-related deaths that still occur every year in the United States. Mark wanted to explore the topic after the death of his friend Antron-Reshaud Olukayode.

As Mark writes in his essay, “The news was quite a shock for me because an empowered person living with HIV isn’t supposed to die at age 33. Or so I believed.”

We published a roundup of the social media responses to the essay in the July/ August 2018 print issue. In this issue, which focuses on aging with HIV, we also excerpt a blog post by Mark titled “I Wrote ‘The Truth About the 7,000.’ Now What?” about the aftermath of the essay. Turns out, aging with HIV remains a challenge.

Go to page 16 to read the excerpt.

Mark’s essay got me thinking more about exploring other hard truths that stick with us. That nearly 7,000 people are still dying year after year means there are just as many families mourning those deaths. They are all struggling with grief, but many of those families are also raising the children of parents lost to AIDS. Our cover subjects are one such family.

Nora Young is raising her grandsons, Jordan, age 10, and Jason, age 5. Her daughter, Jasmine, died of AIDS-related illness in 2013. Jasmine lost her husband, also named Jason, to AIDS just two weeks before the birth of their second son. Since Nora became a widow when Jasmine was young, she is raising her grandsons alone, with some help along the way, thankfully.

Not only did I want to explore the topic from today’s point of view, but I also

CALL FOR NOMINATIONS! 9TH ANNUAL POZ 100 The 2018 POZ 100 will celebrate people living with HIV from across the country who are 50 and older and making a difference in the fight against HIV/AIDS. Established in 2010, the POZ 100 recognizes individuals and organizations committed to ending the HIV/AIDS epidemic.

For more information and to submit a nomination (self-nominations are welcome), go to POZ.com/nominate.

Early Deadline: August 24

Don’t delay!

Submit your nomination for the 2018 POZ 100 today!

POZ Q+A

BY ORIOL R. GUTIERREZ JR.

Visual AIDS marks 30 years of supporting the arts to fight HIV with new leadership and renewed focus.

E

STHER MC GOWAN IS EXECUTIVE DIRECTOR OF VISUAL AIDS. The nonprofit HIV organization, according to its mission statement, “utilizes art to fight AIDS by provoking dialogue, supporting HIV-positive artists and preserving a legacy, because AIDS is not over.” She became executive director in 2017. Previously she had been associate director since 2012.

Before Visual AIDS, McGowan held various roles in nonprofit management, including development and marketing director for The Center for Fiction, development and special events consultant for clients such as the Bronx Museum of Arts and Downtown Arts Projects, and development director for the Alliance for the Arts.

She earned a bachelor of arts in art history from New York University.

Founded in 1988, Visual AIDS is perhaps still best known as the creator of the red ribbon and the Day With(out) Art national project held each year on World AIDS Day, which is December 1. To mark its 30th anniversary, Visual AIDS has launched new programs with a revived sense of urgency in the fight against HIV.

Tell us about one of the new Visual AIDS projects.

Visual AIDS has never stopped doing the work that we do since we were founded in 1988. But as the epidemic has changed, so have we. Part of our mission is to look back, especially at the history of art and AIDS activism. However, we also look at issues that have urgency now. As a result, we adapt existing programs and create new programs that relate to contemporary issues.

For example, one of the things that we’re doing for our 30th anniversary year is to look back at some of the projects that we did in the early ’90s. In particular, we decided to revisit broadsides. We commissioned well-known artists back then to

6 POZ SEPTEMBER 2018 poz.com

make them—they were 8½" x 11" black and white artworks made in that size so they could be photocopied and widely distributed for free.

Artists would create eye-catching broadsides that were designed to share information on a certain topic to galvanize people. Barbara Kruger did one for women, which was ver y for wardthinking at the time. Glenn Ligon did one for communities of color. John Giorno did several related to loss, relationships and caring. We wanted to create new broadsides to address today’s topics.

So we worked with Avram Finkelstein, who was a part of Gran Fury and the Silence = Death collective. He worked with us to create a larger broadside that shares information about HIV criminalization, which is a topic that we are really interested in generating activism around. We’re not the leaders in this field, but groups like the Sero Project inspired us to get involved.

We launched this foldout broadside at New York City Pride. We handed them out as we marched. That’s an exam-

COURTESY OF VISUAL AIDS

AIDS IS NOT OVER

Clockwise from left: Artists, activists and women living with HIV at the Love Positive Women valentine pop-up exhibition; artwork on sale at Postcards from the Edge; Day With(out) Art video by Thomas Allen Harris

ple of one of the things we’re doing this year, and something I’m personally interested in as the new director, the idea of getting back to our activist roots, which is particularly important now in the current political climate.

After effective treatment arrived, our projects became more passive. We created exhibitions, published books, worked with our archive and registr y, and looked at all the ways we could help HIV-positive artists through grants and other types of support, all of which remain important for us to do. But we want to supplement all of that now with projects that feel more activist in nature.

Do you have another example?

LUCAS MICHAEL

Yes, an exhibition called Cell Count that was curated by two emerging curators, Kyle Croft and Asher Mones, which was also about HIV criminalization.

To take a step back, Visual AIDS uses a proposal process to bring in outside curators to curate exhibitions for us every year, always on a different topic. We selected Cell Count because of our interest in HIV criminalization, and their interest in making it an activist moment was very appealing to us.

The exhibition included not only artwork hanging on the walls and video pieces but also moments for people to become educated. People were given resources to write to their congresspeople about various state laws.

They also published an intensive book that went beyond an exhibition catalog , which had commissioned writings from experts in the field of HIV criminalization, including people who are currently or have been incarcerated. The art was a jumping-off point to help people delve deeply into this topic. [ Editor’s note: Go to page 13 to read more about the HIV criminalization broadside and Cell Count.]

institutions to engage in caregiving or activism on World AIDS Day. As the AIDS pandemic changed, it felt more urgent to do projects that were about contemporary issues. So a few years ago, we focused on working with filmmakers to share their documentaries.

Starting in 2014, we began commissioning our own short films from artists.

That year, seven artists made sevento nine-minute films about how HIV affected them. Some were in a documentary style, others were like abstract artwork. They ranged from personal stories of disclosure to a documentation of loss. We shared the films with institutions such as museums, universities and AIDS service organizations across the country and around the world.

We then commissioned a series of

Esther McGowan

We don’t have the actual works; instead, we have images of them. Originally, it was a slide archive, but since then, it’s become digitized. It’s now all online at VisualAIDS.org. The only criteria for people to be included are that they are HIV positive and make art.

One of the exciting things that has been happening in recent years, and something we’re interested in continuing, is encouraging curators and researchers to discover self-taught artists in our archive and registry when they’re doing their PhD or curating a show.

There are examples of artists who have recently been in museum shows who now have gallery representation because they were discovered in the Visual AIDS archive and registry.

Other projects include publications

“Getting back to our activist roots is important now in the current political climate.”

short films called Alternate Endings with the help of outside curators, using imagery from our archive and registry, combined with slides of contemporary facts about HIV and AIDS. Since then, we’ve created sort of sequels to them.

This year, the series will be called Alternate Endings: Activist Risings .

We’re partnering with activist groups to learn how art intersects with their activist work. People around the world will get to know these organizations as they reflect on the impact of art on activism.

What’s new with Day With(out) Art?

Tell us more about Visual AIDS.

Day With(out) Art was originally a day in which museums and other institutions were asked to close their doors, or remove artwork from the wall, or in some way visually commemorate the losses of the AIDS crisis and to also encourage people who work for those

In a sense, we have a two-part mission: to commission artists to create activist projects around HIV and AIDS and to maintain and promote our archive and registry of work by HIV-positive artists, which was started by Frank Moore, a well-known artist who died in 2001.

such as our Duets series, which feature two people in conversation; tote bags with activist artwork; our Postcards from the Edge annual event; the Print Positive Editions, where we commission new works; Play Smart, our condom project; and Love Positive Women, a Valentine’s Day project launched by one of our artist members in Canada, Jessica Whitbread.

What keeps you so motivated?

This is my favorite job that I’ve ever had.

It combines my interest in visual art with my background in nonprofits. But when you combine that with our mission around HIV and AIDS, it creates a feeling of value to the work that we do.

We try to create community. There’s a sense of excitement and forward motion in what we do, so it keeps it enjoyable and feeling important. ■

poz.com SEPTEMBER 2018 POZ 7

POZ PLANET

BY TRENT STRAUBE

STAY IN TOUCH New groups help long-term survivors connect via workshops, social outings and spaghetti dinners!

The Terry Brenneis Hub for Long-Term Survivors is part of Gay Men’s Health Crisis (GMHC) in New York City, but Hub participants don’t have to be GMHC clients. In fact, curious folks from anywhere can follow the Hub’s Facebook page or reach out to the group’s leaders: Gregg Bruckno, BEd, himself a longterm HIV survivor, and Susan Rowley, JD, LMSW, who is also the director of the GMHC Hotline and Buddy Program.

The Hub hosts monthly educational workshops on topics such as body image, self-compassion and common HIV comorbidities, including bone density issues and heart problems; what’s more, the workshops include time to socialize.

Events like these are important, Bruckno

8 POZ SEPTEMBER 2018 poz.com

says, because long-term survivors have said they felt there was nothing for them beyond support groups. Plus, they have expressed a lot of interest in learning specific HIV-related information.

The Hub also connects people to non-GMHC events held for long-term survivors—such as a recent spaghetti dinner and movie screening at a West Village church—and it has provided guidance and inspiration to organizations wanting to better serve their members who are long-term survivors. “We’ve been doing a little informal capacity building,” Rowley says of the growing interest in this population.

Because some long-term survivors aren’t internet savvy or feel discriminated against or shamed when they use apps and social media, the Hub offers them an email list and an active phone presence; it’s also working on a snailmail newsletter.

“A lot of long-term survivors who are gay don’t have social connections anymore. [Their friends] have died or moved away, or they’re still ostracized from their family,” says Bruckno, who points to another problem causing people to isolate:

“Ageism is an issue From left: a ribbon-cutting in this country—no ceremony for matter if you’re gay the Hub at or HIV positive.”

GMHC; a pool “When people party in South start to isolate,” Florida Rowley adds, “they stop taking care of themselves and they lose connections.

The internet is not enough. TV is not enough. People need social connections to have a healthy life.”

To contact the Hub, call 212.367.1063 or email LTHSHub@gmhc.org.

The Metropolitan Community Church of the Palm Beaches (MCCPB) HIV Long-Term Survivors Network was launched in Palm Beach Gardens by Chris Lacharite, a retired nurse who was approached by the church’s pastor in an effort to do more for the HIV community (side note: South Florida leads the nation in new HIV diagnoses).

The MCCPB group meets three to four times a month for a variety of fun activities: board games, pool parties, the all-important spaghetti dinner and, in the near future, yoga, movement

COURTESY OF GMHC

Attention long-term survivors, here’s some news you can use. Research shows that isolation can lead to feeling depressed and not wanting to leave the house or take your meds (clearly not good for your health). But new groups are popping up around the country with the specific goal of helping you connect or reconnect with others. Here are two such efforts.

K KEEPING HIV HISTORY ALIVE H Y don’t have to be a long-term You s survivor to enjoy these reads.

COURTESY OF CHRIS LACHARITE

C Creating a Framework for HIV Survival S

By Jeff Berry and Matt Sharp B Released on June 5 to coincide R with HIV Long-Term Survivors w Awareness Day, this free downA loadable report arrives courtesy lo of The Reunion Project. It calls for the creation of a national fo coalition of long-term survivors co to help advance research, programs, community building and g advocacy. This is needed, the ad authors write, to help survivors a “as we continue to battle the “a long-term effects of medications, lo isolation, post-traumatic stress is disorder, stigma, aging and cod morbidities, [among other issues].” m

classes and educational events about healthy aging.

Lacharite understands firsthand the needs of long-term survivors—he is one. “I lost my partner and best friend within six months and many more friends over the course of a decade,” he says. “The grief and rage I experienced have resulted in several mental health issues that I deal with to this day.”

As a practicing nurse, he had patients who were long-term survivors. “Many verbalized concerns about feelings of being left behind and not understood by the HIV community, especially younger HIV-positive individuals and providers,” he recalls. “Many of my patients had inadequate financial resources because of careers cut short and were living with multiple physical and emotional problems associated with long-term survivorship. Many were isolated.”

In launching the network, Lacharite drew on the Let’s Kick ASS (AIDS Survivor Syndrome) movement begun in San Francisco; Lacharite also received seed money from a grant via the cycling fundraiser SMART Ride (Southern Most AIDS/HIV Ride).

“Our goal is to help build and maintain a resilient community of HIV long-term survivors,” Lacharite says. They’ll accomplish that through “providing social, educational and other activities that nurture connecting relationships with others and promote life-affirming self-care.”

To contact Lacharite, call 561.775.5900 or email him at chris@mccpb.org.

THE REUNION PROJECT

CREATING A FRAMEWORK FOR HIV SURVIVAL THE REUNION PROJECT NATIONAL ROUNDTABLE FORUM MARCH 30-31, 2018 ANNENBERG CENTER FOR HEALTH SCIENCES RANCHO MIRAGE, CALIFORNIA

BY JEFF BERRY AND MATT SHARP

“THE REUNION PROJECT honors the history and the future of all who have survived and are living the epidemic.”

The Great Believers

By Rebecca Makkai Two intertwining stories shift from 1980s Chicago, where AIDS is devastating a close group of gay friends, and 2015 Paris, where the now-grown sister of one of those gay men is searching for her estranged daughter. Needless to say, the early epidemic reverberates in unexpected ways. In his New York Times review, Michael Cunningham, author of The Hours, calls Makkai’s third novel “a page-turner about illness and morality.”

HIV Pioneers: Lives Lost, Careers Changed, and Survival Edited by Wendee M. Wechsberg This nonfiction collection includes profiles of and personal narratives

by HIV researchers, doctors, activists and long-term survivors from the early days of the AIDS epidemic.

The writings here showcase often overlooked voices and a fascinating range of topics: a 25-year-long patient-doctor relationship, people who use drugs, a bishop in the Black church, eureka moments in HIV science, and prevention efforts among South African women.

poz.com SEPTEMBER 2018 POZ 9

Jesus Positive since 1986

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ESA

DRUG-RESISTANT

HIV

FINALLY GETS A

TREATMENT

IT DESERVES. Now you can fight back with TROGARZO™ (ibalizumab-uiyk) — An HIV treatment as unique as you are.

TROGARZO™ works differently than other HIV medications, and was designed specifically for patients living with drug-resistant HIV. In a clinical study, 83% of patients were able to reduce their viral load after receiving a single dose of TROGARZO™.* Ask your doctor if TROGARZO™ should be part of your treatment plan, or visit TROGARZO.com to learn more.

*For complete study details, refer to the full Prescribing Information at TROGARZO.com

WHAT IS TROGARZO™?

TROGARZO™ (ibalizumab-uiyk) is a prescription medicine that is used with other antiretroviral medicines to treat Human Immunodeficiency Virus-1 (HIV-1) infection in adults who: • have received several anti-HIV-1 regimens in the past, and • have HIV-1 virus that is resistant to many antiretroviral medicines, and • who are failing their current antiretroviral therapy.

It is not known if TROGARZO™ is safe and effective in children.

IMPORTANT SAFETY INFORMATION TROGARZO™ can cause serious side effects, including changes in your immune system (Immune Reconstitution Inflammatory Syndrome) which can happen when you start taking HIV-1 medicines. Your immune system might get stronger and begin to fight infections that have been hidden in your body for a long time. Tell your healthcare provider right away if you start having new symptoms after receiving TROGARZO™.

The most common side effects of TROGARZO™ include diarrhea, dizziness, nausea, rash. These are not all the possible side effects of TROGARZO™.

Before you receive TROGARZO™, tell your healthcare provider: • About all your medical conditions.

• About all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements.

• If you are pregnant or plan to become pregnant.

It is not known if TROGARZO™ may harm your unborn baby. Tell your healthcare provider if you become pregnant during treatment with TROGARZO™.

• If you are breastfeeding or plan to breastfeed.

Do not breastfeed if you are receiving TROGARZO™ as it is not known if TROGARZO™ passes into breast milk.

You should not breastfeed if you have HIV-1 because of the risk of passing HIV-1 to your baby.

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.

Please see Important Information about TROGARZO™ on the following page, and the full Prescribing Information at TROGARZO.com.

TROGARZOTM is a trademark of TaiMed Biologics Inc., under license to Theratechnologies Inc. © 2018 Theratechnologies Inc. All rights reserved.

447-01-08/18

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ESA

IMPORTANT INFORMATION ABOUT TROGARZO™ (ibalizumab-uiyk) ABOUT TROGARZO™ TROGARZO™ is a prescription medicine that is used with other antiretroviral medicines to treat Human Immunodeficiency Virus-1 (HIV-1) infection in adults who: • have received several anti-HIV-1 regimens in the past, and • have HIV-1 virus that is resistant to many antiretroviral medicines, and • who are failing their current antiretroviral therapy.

HIV-1 is the virus that causes Acquired Immune Deficiency Syndrome (AIDS). It is not known if TROGARZO™ is safe and effective in children.

BEFORE TAKING TROGARZO™ Before you receive TROGARZO™, tell your healthcare provider: • About all your medical conditions.

• About all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements.

• If you are pregnant or plan to become pregnant.

It is not known if TROGARZO™ may harm your unborn baby. Tell your healthcare provider if you become pregnant during treatment with TROGARZO™. Pregnancy Registry: There is a pregnancy registry for women who take antiretroviral medicines, including TROGARZO™, during pregnancy. The purpose of this registry is to collect information about the health of you and your baby. Talk with your healthcare provider about how you can take part in this registry.

• If you are breastfeeding or plan to breastfeed.

Do not breastfeed if you are receiving TROGARZO™ as it is not known if TROGARZO™ passes into breast milk. Talk with your healthcare provider about the best way to feed your baby during treatment with TROGARZO™. You should not breastfeed if you have HIV-1 because of the risk of passing HIV-1 to your baby.

15 to 30 minutes. A healthcare provider will monitor you during the TROGARZO™ infusion and for a period of time after your infusion.

• You will receive TROGARZO™ every two weeks.

• It is important that you receive TROGARZO™ every two weeks as instructed by your healthcare provider. Do not change the schedule of your TROGARZO™ infusions or any of your antiretroviral medicines without talking to your healthcare provider first.

Tell your healthcare provider right away if you stop receiving TROGARZO™ infusions or stop taking any other antiretroviral medicines.

POSSIBLE SIDE EFFECTS OF TROGARZO™ TROGARZO™ can cause serious side effects, including changes in your immune system (Immune Reconstitution Inflammatory Syndrome) which can happen when you start taking HIV-1 medicines.

Your immune system might get stronger and begin to fight infections that have been hidden in your body for a long time. Tell your healthcare provider right away if you start having new symptoms after receiving TROGARZO™.

The most common side effects of TROGARZO™ include diarrhea, dizziness, nausea, rash.

These are not all the possible side effects of TROGARZO™. Call your doctor for medical advice about side effects.

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.

You may also report side effects to THERA patient support™ at 1-833-23-THERA (1-833-238-4372).

MORE INFORMATION ON TROGARZO™ For more information, call THERA patient support™ at 1-833-23-THERA (1-833-238-4372), or visit www.TROGARZO.com.

HOW TO TAKE TROGARZO™ How will I receive TROGARZO™?

• You will receive TROGARZO™ by your healthcare provider as an infusion given into your vein over

TROGARZOTM is a trademark of TaiMed Biologics Inc., under license to Theratechnologies Inc. © 2018 Theratechnologies Inc. All rights reserved.

447-01-08/18

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ESA

POZ PLANET

BY TRENT STRAUBE

THE ART OF FIGHTING HIV CRIMINALIZATION (GALLERY AND SOAP) COURTESY OF VISUAL AIDS/JULIA GILLARD; (PRIDE MARCHERS) COURTESY OF VISUAL AIDS/ELLIOT LUSCOMBE

At a gallery, in print and during a Pride march A recent art exhibit titled Cell Count in New York City included a bar of soap with the word criminal carved into it like a logo.

What, you may ask, does this have to do with art? Well, the 2013 work by Camilo Godoy is made of soap, lavender, blood and the HIV-positive artist’s semen.

Aha! The piece, like all others included in the exhibit at La MaMa La Galleria, explores the topic of HIV criminalization.

Godoy seems to be alluding to the stigmatizing phrases “clean” and “dirty” as they pertain to dating, sex and disclosure.

The show featured works in various media, such as drawings, photography, sculpture, quilts, performance and video, by 17 artists, including several collaborations. The most recent piece was commissioned for the show; the oldest ones—those by Barton Lidicé Beneš and Frank Green—date to the early ’90s.

“In the last few years, there has been a lot of interest in the history of the AIDS epidemic,” says Kyle Croft, who curated the show with Asher Mones for Visual AIDS, which uses art to draw attention to the epidemic. “In Cell Count, Asher and I wanted to

bring that sense of urgency out of the past tense and highlight contemporary political concerns around criminalization and surveillance.”

The resulting works, Croft says, “address themes such as the rendering of bodies as weapImages from ons; testing and medical surveillance the Cell Count as a form of control; the afterlife of slavexhibition; inset ery in medical and sexual cultures; and top: the cover of the effects of incarceration and stigmathe show’s catalog tization on people living with HIV.” The show closed this summer, but you can still see the art.

Slide shows are posted on VisualAIDS.org and POZ.com, and Visual AIDS offers a 116-page Cell Count catalog that includes essays and reports from activists. Go to page 6 for our Q&A with Esther McGowan, the executive director of Visual AIDS.

STREET ART Cell Count curators collaborated with artist Avram Finkelstein and the Visual AIDS staff to print a four-page broadside about HIV criminalization. The crew joined the Sero Project and the Center for HIV Law & Policy for Manhattan’s Pride march, during which they handed out thousands of copies, taking the message to the masses.

poz.com SEPTEMBER 2018 POZ 13

“HIV is just a virus.

It’s the stigma that is the deadly disease.”

Stigma hurts the well-being and mental health of people living with HIV, and even prevents some from getting medical treatment.

Let’s stop HIV stigma together.

Learn how at cdc.gov/together

/ActAgainstAIDS

/ActAgainstAIDS

@TalkHIV

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ESA

POZ PLANET

BY TRENT STRAUBE

From left: Johnny Lester and David Massey; below: a Spanish version of the campaign

LET’S STOP HIV STIGMA

COURTESY OF CDC

A CDC campaign returns with new faces and a timeless message.

While growing up, David Massey witnessed his family serve food to an HIV-positive relative on a separate set of dishes. He never forgot that stigmatizing message.

When Massey tested positive for the virus, he vowed that nobody would know.

Stigma remains a major barrier to HIV prevention, testing and treatment. That’s why, in order to beat the epidemic, we must confront stigma. To that end, the Centers for Disease Control and Prevention (CDC) relaunched the 2012 campaign titled “Let’s Stop HIV Together.” What, exactly, is HIV stigma? The nationwide campaign defines it as “negative attitudes and beliefs about people living with HIV. It is the prejudice that comes with labeling an individual as part of a group that is believed to be socially unacceptable.”

The campaign includes posters, web banners, videos, fact sheets, social media posts (search #StopHIVStigma and #StopHIVTogether) and a guide to talking about the virus in language that isn’t stigmatizing—for example, instead of saying “HIV patient” or “AIDS victim,” you can say “person living

with HIV” or “HIV-positive person.”

What’s more, the reboot stars a new roster of folks surviving and thriving with the virus. Massey is one of them.

“I realized that if stigma was going to be broken, it had to start with me,” Massey, who lives in Atlanta, tells POZ. After keeping silent about his HIV diagnosis for three years, he disclosed to his relatives (they are religious). Turns out, the family members were supportive and loving.

The disclosures didn’t stop there. Five years ago, on a first date with Johnny Lester, who is HIV negative, Massey told him that he has HIV. Today, they’re engaged.

They’re also outspoken advocates on many forums—POZ readers will recognize the “David & Johnny” brand and the Table Talk videos they regularly post on POZ.com/blogs.

“We wanted to show people that HIV does not slow me, him or us down,” explains Massey about the couple’s involvement in the “Let’s Stop HIV Together” campaign. “We still have work to do and lives to live.”

poz.com SEPTEMBER 2018 POZ 15

VOICES BLOGS AND OPINIONS FROM POZ.COM

NOW WHAT?

I

t began with a death and a lingering question. After a friend—an advocate who knew what to do to stay alive— died of an AIDS-related cause a few months ago, I was left wondering why.

Together with other deaths in the news of people “unexpectedly” dying the same way, it felt like a tragic trend.

I wanted to know who the 7,000 people are who die of AIDS-related causes in the United States each year and why it happens. In the months that followed, I spoke to more people than I have ever interviewed for a story before: people living with HIV, doctors, case managers, care coordinators and nurses.

In writing “The Truth About the 7,000,” I got more answers to my simple “Why?” than I ever expected.

The essay struck a nerve and got massive views and shares on social media. Many people know of someone who slipped away, someone they never knew might have been struggling with his or her HIV care or regimen of medications. In comments on social media and on POZ.com, people shared the challenges of maintaining a positive attitude, much less their drug regimen, over the long run.

Most significant, though, have been the comments in which folks have

16 POZ SEPTEMBER 2018 poz.com

indicated that they, too, are struggling and have not felt safe to admit it. With all the positive news happening in this modern age of HIV treatment and prevention, one can imagine why people might feel like failures for not measuring up because they were not undetectable or not maintaining their care.

These comments moved me the most because I saw people step out of the shadows and show their vulnerability.

At the recent Speak Up! conference

by Positive Women’s Network–USA, board chair Barb Cardell pulled me aside to say that women were checking in with one another a little more closely and some were saying things about their lack of self-care that they had not admitted to friends before.

In a blog post on the AIDS Foundation Chicago website, Peter McLoyd shares his thoughts on the essay: “Do we talk enough about those who continue to suffer and die? With all that we know today, why are there still 7,000 HIVrelated deaths each year? Can we focus on reducing the number of new infections in tandem with lowering mortality rates?”

Bruce Richman of the Prevention Access Campaign has offered to devote an hour of the “Undetectable =

Untransmittable” program track at the 2018 United States Conference on AIDS to the issue of those who, for a multitude of reasons, have not achieved viral suppression so that we might begin a discussion about creating spaces where people can be candid about their own treatment challenges and look for solutions.

Why? As I wrote in my essay: “Because the statistic that 7,000 people will die simply waits, year after year, to be satisfied. Because depression and fatigue can undermine the will to live. Because people deserve the truth about life with HIV and the support to face it. Because we don’t want to be shocked all over again and left wondering why.”

Are you struggling to maintain your HIV health regimen? Do you know someone who is? Have you had frank conversations with that person to be sure? What kinds of programs or changes need to be made so that people who are falling out of care or have stopped their meds have a safe space to discuss their situation? What should we as advocates be doing about this?

Please be well. And if you are not, my friends, please reach out and talk to someone you trust. ■

ISTOCK

In a post titled “I Wrote ‘The Truth About the 7,000.’ Now What?” blogger, author and activist Mark S. King reflects on the aftermath of his essay from the April/May 2018 issue of POZ. Below is an edited excerpt.

WILL WE? After turning 70 years old, AIDS United policy fellow Ronald Johnson takes a thoughtful look back in a blog post titled “As We Mark 37 Years of HIV, We Can End the Epidemic. Will We?” Below is an edited excerpt.

ISTOCK

A

notice appeared on June 5, 1981, in the Morbidity and Mortality Weekly Report (MMWR), published by the Centers for Disease Control and Prevention, that a rare form of pneumonia had been diagnosed among five “active homosexuals” in Los Angeles. Two of them had died.

All had been previously healthy.

There was little immediate public reaction to the MMWR notice. The Associated Press and the Los Angeles Times filed stories about the report on June 5, and the San Francisco Chronicle ran an article on June 6. The New York Times published an article a month later on what by then were 41 cases of a rare form of cancer among gay men in New York and California.

Reading that article on the eve of July 4 as a gay man living in New York City, I thought it was strange but had no idea that our world was about to change drastically. By mid-August Larry Kramer had pulled together a group of gay men who raised the funds that led to the formation of Gay Men’s Health Crisis in January 1982, the first U.S. AIDS service organization.

Along with that activist response, there was fast-growing fear among many gay men, increased stigmatization

of gay men and of gay sex (including internalized stigma), stigmatization of injection drug users and of drug use in general, and increased discrimination and blindness to the impact of the emerging epidemic on women who did not have a history of drug use.

There was also much hope and optimism in those early years that a cure would be found quickly. However, the more dominant reaction among the general public and most levels of government was the willful and shameful ignorance of the nascent epidemic and the neglect of, animosity toward and abhorrence of people living with and dying of the newly recognized disease.

When I was 41 years old and diagnosed with HIV in 1989, I was convinced that I would be dead before my 50th birthday. Then, in 1996, the arrival of effective HIV treatment brought back hope and optimism. However, that revival was soon challenged by the clear inequities and gaps in access to the new drug therapies and to HIV prevention education and services.

June 5, 2018, was the 37th anniversary of the pandemic. We have two generations of people who’ve never known a world without AIDS, but we also have the tools to end the epidemic in the

United States and globally. I recently celebrated my 70th birthday. I’m more worried about my back than I am about having HIV. And I’m not the only longterm survivor. There are many of us.

However, there are also many people who remain vulnerable to HIV or whose HIV is undiagnosed or not successfully treated. Numerous factors account for those realities. For me, the salient factor is the continued lack of sufficient political will to end the HIV epidemic.

We have a president, an administration and a congressional majority who have made little public effort to highlight the priority of ending the HIV epidemic. Thankfully, tenacious federal leaders and workers are moving forward to maintain a strong federal response to HIV. And thankfully, the courage and determination of people living with and affected by HIV have kept hope and optimism alive.

We enter the 38th year of AIDS and HIV still counting. We can end the epidemic, but will we? If the political landscape does not support our efforts, then we must elect leaders with the political will. The 2019 anniversary can be a marker on the countdown to ending the HIV epidemic. Yes, we can.

More importantly, we must. ■

poz.com SEPTEMBER 2018 POZ 17

SPOTLIGHT

BY JOE MEJÍA

#WhatIsRememberedLives When POZ first wrote about @theaidsmemorial last year, the Instagram account dedicated to sharing stories of “love, loss & remembrance” was still in its infancy. It started in the spring of 2016 as the passion project of one man, Stuart, who compiled obituaries (often clipped from newspapers) to honor those lost to the AIDS epidemic. But it has now evolved into a crowdsourced repository for tributes submitted by many thousands. At last count, the buzzed-about feed had more than 54,500 followers. Stuart now even has his own blog on POZ.com, which features highlights from Instagram as well as interviews.

Since then, @theaidsmemorial has parlayed its social media clout into a partnership with artist Zach Grear and retailer Adam’s Nest to produce and sell T-shirts promoting the feed and benefiting Housing Works with a 25 percent share of sales revenue (get yours at AdamsNest.com). The savvy move has resulted in a free public awareness campaign in the form of celebrities wearing the tees, coverage in mainstream magazines and even more submissions by ordinary folks and some famous ones. All of this serves to remind us not only of the lives already lost but also of the many lives still imperiled by the virus.

A week on & still floods of touching, personal, kind & heartfelt messages.

THANK YOU THANK YOU! Hopefully my loud mouth can give a little volume for the more softly spoken of u out there who aren’t quite sure if you’re ready to step out of the shadows. #theaidsmemorial #uequalsu Posts may be edited for clarity and/or space.

18 POZ SEPTEMBER 2018 poz.com

poz.com SEPTEMBER 2018 POZ 19

Introducing the new and improved RealHealthMag.com WEBSITE FEATURES INCLUDE: • Responsive design optimized for smartphones and tablets • Faster site for quicker load times • Redesigned for easier readability and navigation • Improved search function

EVERYDAY

BY JENNIFER MORTON

September 7 1 8

The AIDS-themed Broadway musical Rent take its final bow. (2008)

2,500 activists marched on PRESIDENT BUSH’S VACATION HOME in Kennebunkport, Maine, to demand leadership on AIDS. After a die-in on the road to the Bushes’ house, activists unrolled a 50-foot-long banner outlining a 32-point plan to end the AIDS crisis. (1991)

Actor BRAD DAVIS dies of AIDS-related complications at age 41. He played the lead role in Larry Kramer’s The Normal Heart. (1991)

The CDC identifies ALL MAJOR ROUTES OF HIV TRANSMISSION— and rules out transmission by casual contact, food, water, air or environmental surfaces. (1983)

9 2

The Centers for Disease Control and Prevention (CDC) publishes THE FIRST OCCUPATIONAL HIV EXPOSURE PRECAUTIONS for health care workers and allied health professionals. (1983)

5 (LOBSTER, STREET SIGNS, RAINBOW FIGURES, GAVEL) ISTOCK; (HELMS HOUSE/CONDOM) COURTESY OF PETER STALEY; (PERKINS) GETTY IMAGES

Activists put a giant condom over SENATOR JESSE HELMS’S house. (1991)

The CDC releases REVISED HIV TESTING RECOMMENDATIONS for health care settings, recommending routine HIV screening for all individuals ages 13 to 64 and yearly screening for those at high risk. (2006)

22

The CDC uses the term “AIDS” (acquired immune deficiency syndrome) for the first time. (1982)

24

12

Actor ANTHONY PERKINS, known for playing Norman Bates in Psycho, dies of AIDS-related pneumonia at age 60.

(1992)

PRESIDENT RONALD REAGAN mentions AIDS publicly for the first time during a press conference. (1985)

17

18

NATIONAL HIV/AIDS AND AGING AWARENESS DAY

27

NATIONAL GAY MEN’S HIV/AIDS AWARENESS DAY

30

New York’s attorney general and Lambda Legal file the FIRST HIV-RELATED DISCRIMINATION LAWSUIT on behalf of Joseph Sonnabend, MD, and his patients.

(1983)

AIDS is an everyday experience. These dates represent milestones in the AIDS epidemic.

Some dates are known globally; others commemorate individual experiences. AIDS Is Everyday is an ongoing art project produced in conjunction with Visual AIDS to help break down the silence, shame and stigma surrounding HIV. Add a date about your history with HIV to our online calendar at poz.com/aidsiseveryday-submit.

poz.com SEPTEMBER 2018 POZ 23

CARE AND TREATMENT

BY BENJAMIN RYAN

CANCER BURDEN TO SHIFT As the HIV population steadily ages, the top cancer diagnoses among those with the virus will shift over time, with prostate and lung cancer topping the list in 2030, according to a recent study. Overall, cancer incidence among the U.S. HIV population is expected to decline through the next decade.

“In order to reduce the incidence of lung cancer,” says Eric A. Engels, MD, MPH, of the Division of Cancer Epidemiology and Genetics at the National Cancer Institute (NCI), who was the lead author of the study, “HIV-infected people should discuss smoking cessation with their care providers and make a strong effort to quit smoking.”

Engels and his colleagues analyzed data from NCI’s HIV/AIDS Cancer Match study, modeling cancer diagnosis rates during 2000 to 2012 to make projections about how rates will change through 2030.

Between 2000 and 2012, the 463,300 HIV-positive adults in the study were s,, or diagnosed with 24,000 cancers. During this period, the annual diagnosis rates, incidence, declined for Kaposi sarcoma (KS), non-Hodgkin lymphoma (NHL), cervical cancer, anal cancer (among men who have sex with men), lung cancer, Hodgkin lymphoma and other cancers among all age types. Colon cancer incidence decreased among those age 65 and older. Prostate cancer incidence increased among men ages 35 to 64.

Among three AIDS-defining cancers, the estimated numbers of diagnoses seen in the U.S. HIV population in 2010 and projected to occur in 2030, respectively, were: 1,490 and 450 diagnoses of NHL; 1,120 and 240 diagnoses of KS; and 120 and 30 diagnoses of cervical cancer.

As for non-AIDS-defining cancers, the respective numbers of diagnoses seen in 2010 and projected to occur in 2030 were: 830 and 1,030 diagnoses of lung cancer; 750 and 1,590 diagnoses of prostate cancer; 580 and 450 diagnoses of anal cancer; 360 and 480 diagnoses of liver cancer; 300 and 120 diagnoses of Hodgkin lymphoma; 250 and 340 diagnoses of oral cavity/ pharyngeal cancer; 220 and 260 diagnoses of breast cancer; and 220 and 200 diagnoses of colon cancer.

Not long after an individual contracts HIV, the virus penetrates the brain and begins to cause progressive damage to the volume of the organ as well as the thickness of the cerebral cortex. Antiretroviral (ARV) treatment apparently halts this progression and dials back some of the damage.

Investigators studied 65 people who entered the study soon after they contracted HIV. These participants, 30 of whom started ARV treatment during the study, received multiple MRIs of their brains over time.

The investigators compared the brain scans of the participants with scans of 16 people with long-term HIV infection as well as 19 HIV-negative individuals.

The study authors found that before participants began ARV treatment, a longer time spent with untreated HIV was associated with loss of volume in various parts of the brain. Similarly, more time living with untreated HIV was also linked with thinning of the cerebral cortex.

After individuals started ARVs, the progression of such brain damage stopped, and some small increases in measures of cerebral cortex thickness were seen.

“The findings make the neurological case for early treatment initiation,” says Ryan Sanford, a PhD candidate in the department of biological and biomedical engineering at McGill University in Montreal and the study’s corresponding author, “and send a hopeful message to people living with HIV that commencing and adhering to treatment may protect the brain from further injury.”

24 POZ SEPTEMBER 2018 poz.com

ALL IMAGES: ISTOCK

HIV Treatment Halts Damage to Brain

FDA OKs PrEP for Adolescents

DO DOCS NAVIGATE CONFLICTING HIV AND HEP C MEDS WELL? Dutch clinicians in a recent study apparently did a good job of negotiating potential harmful drug-drug interactions (DDIs) between antiretroviral (ARV) treatments for HIV and direct-acting antiviral (DAA) treatments for hepatitis C virus (HCV) among those coinfected with both viruses. However, researchers found that these health care providers could do better at preventing ill-advised, potentially harmful pairings of DAAs and non-HIV medications.

Researchers analyzed data from a Dutch cohort of 423 HIV/HCV-coinfected individuals who were treated with DAAs. Ninety-nine percent were on ARVs, and 59 percent were taking non-ARV medications as they prepared to undergo DAA treatment.

The study authors looked at the medications that the participants were taking before starting DAAs and categorized them as posing no expected threat of interaction with DAAs, posing a potential threat of an interaction (considered a category 2 DDI) or being ill advised because of potential harmful interactions (a category 3 DDI).

Before starting treatment for hep C, 20 percent of the participants were taking non-ARV medications in category 2 or 3 of DDIs; of these, only 20 percent discontinued those drugs before starting DAAs, including one third of those taking drugs in category 3.

Forty-seven percent of those on ARVs had a category 2 or 3 DDI for their HIV meds. Of those in this group with a category 2 DDI, a bit more than half switched their ARVs; of those with a category 3 DDI, 98 percent switched their ARVs. Eighty-seven percent of the group was cured of hep C. “Savvy patients should be aware of the multitude of potential drug interactions surrounding current HIV and hep C therapies,” says Tony Mills, MD, chief executive officer of the Southern California Men’s Medical Group in Los Angeles. “Discuss these possible conflicts with your doctor to make sure you are both aware of potential pitfalls and that the effectiveness of the treatments are assured.”

The Food and Drug Administration has expanded the approval of Truvada (tenofovir disoproxil fumarate/ emtricitabine) as pre-exposure prophylaxis (PrEP) against HIV to include adolescents as opposed to just those over 18. This means PrEP is now officially approved for adults and adolescents at risk for HIV who weigh at least 77 pounds.

The new approval was based on a 48-week study that enrolled 67 high-risk adolescents ages 15 to 17.

Although the participants’ overall level of adherence to the daily Truvada regimen was promising during the initial three months, when the adoloscents made monthly clinic visits, adherence dropped off dramatically once the study protocol switched to requiring visits only every three months, as is standard for a PrEP prescription. This phenomenon led researchers to conclude that adolescents may need monthly monitoring to do well on PrEP. The side effects of Truvada as PrEP among these adolescents were comparable to those observed in adult studies.

“Our hope is that this new adolescent indication [for Truvada] addresses a few of the many barriers that people experience when trying to access PrEP,” says Sybil Hosek, PhD, a clinical psychologist at the Cook County Health and Hospital System’s Stroger Hospital in Chicago and lead investigator of the study. “The indication should provide prescribers with increased confidence that this prevention product is safe and well tolerated by youth and thus no longer needs to be provided off-label.”

poz.com SEPTEMBER 2018 POZ 25

Got Ink? An estimated 3–5 million Americans are living with hepatitis C. Most don’t know it.

Get tested today.

THINKSTOCK (MOEL USED FOR ILLUSTRATIVE PURPOSES ONLY)

Find out how at hepmag.com.

RESEARCH NOTES

ALL IMAGES: ISTOCK (MODEL USED FOR ILLUSTRATIVE PURPOSES ONLY)

BY BENJAMIN RYAN

PREVENTION

TREATMENT

CURE

CONCERNS

Antibody PrEP

Integrase Inhibitors

Gene Editing

Racial Disparities

Broadly neutralizing antibodies have shown promise in protecting monkeys against SHIV, a simian version of HIV. Scientists genetically modified two such antibodies to make them stay in the body longer. Then they gave single infusions of one of the two antibodies to rhesus macaques and exposed the animals to SHIV weekly.

The animals that received the antibodies contracted SHIV after a median 17 or 27 weeks compared with just three weeks among those that received a placebo infusion. The investigators also combined both antibodies and injected the combo under the skin of six monkeys (as opposed to into a vein) using a dose equal to one third of the infusion. This method protected the animals against weekly SHIV exposures for a median of 20 weeks. An early human trial of the more effective antibody is under way.

People who take integrase inhibitors for HIV treatment have low rates of stopping these meds because of adverse health events.

Researchers studied 1,340 people in British Columbia who started 1,460 integraseinhibitor-based regimens between 2012 and 2014 and were followed for two years until the study’s end in December 2016. They looked at the rate of discontinuation of integrase inhibitors owing to adverse drug reactions (ADR). Those who experienced an ADR included 4.4 percent, 9.6 percent and 5.2 percent of those who took Isentress (raltegravir), Tybost (cobicistat)-boosted Vitekta (elvitegravir) and Tivicay (dolutegravir), respectively. After adjusting the data for various factors, the researchers found that the ADR rate for those taking Tybost-boosted Vitekta was twice that of those who took Tivicay.

Scientists have succeeded in drawing stem cells from pigtail macaque monkeys, editing them to produce immune cells resistant to SHIV, a simian form of HIV, and engrafting them back into the animals’ bodies.

This so-called autologous transplant gave rise to a significant population of SHIV-resistant immune cells and shrank the size of the viral reservoir in monkeys that had SHIV and were on antiretrovirals. The gene editing caused new CD4 cells to lack a functioning CCR5 coreceptor on the surface of the immune cell, which is what most HIV attaches to in order to infect the cell. (If the cell does not have a functioning coreceptor, most virus cannot infect the cell.) Compared with control monkeys that did not receive the transplant of gene-edited stem cells, the monkeys that received the transplant had lower levels of SHIV DNA and RNA in their tissues, indicating success in shrinking the viral reservoir.

Even when people with HIV have equal access to care for the virus, whites have a higher rate of successful treatment compared with their Black counterparts.

Researchers conducted a study of 8,800 Black individuals and 7,800 white individuals in the Veterans Administration (VA) health system who received antiretroviral treatment for HIV during 2013. Fifteen percent of the African Americans and 8 percent of the whites had an uncontrolled viral load, meaning that, overall, Blacks were twice as likely to lack a fully suppressed virus compared with whites.

After crunching the numbers, the study authors concluded that 51 percent of the difference in the viral suppression rates between Blacks and whites was driven by differences in adherence to HIV treatment and 26 percent was driven by differences related to the specific sites where they received their medical care.

poz.com SEPTEMBER 2018 POZ 29

Nora Young is raising her grandsons, Jordan (left) and Jason.

30 POZ SEPTEMBER 2018 poz.com

RAISING THE CHILDREN OF PARENTS LOST TO AIDS

BY DARYL HANNAH PHOTOGRAPHY BY SAVERIO TRUGLIA

hen Nora Young’s husband died, she was left to raise her daughter, Jasmine, primarily as a single parent. So when Nora discovered that she was going to be a grandmother for the first time, she was over the moon. The Chicago transplant by way of Memphis was ecstatic at the prospect of seeing her close-knit family grow.

Little did she know that the exciting announcement in 2003 of an addition to their small family—Jasmine was her only child—would also come with news that Jasmine was living with HIV. “When Jasmine got pregnant with Jordan, her fi rst son, that’s when she found out she was HIV positive,” Nora tells me. “She was very upset when she found out, but I calmed her down. I told her this is not the end and that there are medications that she can take to live a long, healthy life.”

Nora, a home care nurse, had been reading about the advancements in HIV prevention and treatment medicines in various newspapers and magazines. She encouraged Jasmine to prioritize her health and get on treatment, for her and her unborn son’s sake. Heeding Nora’s advice, Jasmine started taking antiretrovirals.

“She was doing pretty good for a while, but the pressure of things got to her, so she stopped taking her medicine,” says Nora, who continued to encourage Jasmine to stay on her regimen after Jordan was born, going so far as to pick up the medications from the pharmacy herself.

Unfortunately, Jasmine wouldn’t stay on treatment long.

A series of personal hardships made it more and more difficult for her to continue to take her medicine.

Jasmine lost her husband, Jason, to AIDS two weeks before the birth of their second son, also named Jason. She grew tired of hiding her doctor’s visits and her medication from visitors and roommates. And later, after she came out as a lesbian, the woman she was dating and living with abruptly ended their relationship. Jasmine was heartbroken.

She stopped taking her medicine altogether, and her health rapidly declined.

On August 5, 2013, Jasmine died. Suddenly, Nora, who was approaching 60, found herself grieving the loss of her

32 POZ SEPTEMBER 2018 poz.com

only child and caring for her daughter’s two HIV-negative children: Jordan, age 10, and Jason, age 5.

THE PHENOMENON OF GRANDPARENTS AND other relatives serving as primary caretakers for children who’ve lost their parents to AIDS isn’t new. Today, Jordan and Jason are among the millions of children in the United States and around the world who are rendered homeless or left to live with extended family members or to languish in the child welfare system as a result of losing one or both parents to AIDS. And although advancements in treatment and prevention have virtually eliminated mother-to-child transmissions— both Jordan and Jason are HIV negative—and have dramatically reduced the number of AIDS-related deaths, children are still being orphaned by AIDS. “There’s no national data source that tracks the reason children end up in grandfamilies,” says Jaia Peterson Lent, deputy executive director of Generations United, a Washington, DC–based advocacy group that promotes programs and policies to connect people of different ages.

“What we do know is, recently, parental substance abuse is a major factor causing children to come to the attention of the child welfare system, but that is only a very small snapshot. For every child who is in foster care with a relative, there are about 20 kids outside of foster care being raised by relatives.”

Regardless of why children end up in the care of extendedfamily members, according to Lent, they tend to fare better when they live with family as opposed to strangers. They have better behavioral and mental health outcomes. They’re more likely to stay connected to their siblings and have a stronger cultural identity and a greater sense of belonging.

They’re also less likely to change schools.

However, despite the documented emotional, social and psychological benefits of children remaining with relatives, the transition can nevertheless be hard for children and caregivers alike. Children are often processing the trauma of losing their parents, which may manifest as behavioral or academic issues. And unlike expectant parents who have several months to prepare for the arrival of their little ones, grandparents are often stepping into primary parental roles without the time or space to process their grief or get their fi nances in order.

IN THE WEEKS FOLLOWING JASMINE’S DEATH, Nora had to bury her daughter, apply for guardianship of Jordan and Jason and register them for school. Not to mention, she was also caring for her dying fiancé, who had been diagnosed with Stage IV cancer.

Thankfully, Nora was referred to the Families’ and Children’s AIDS Network (FCAN), a federally funded program that serves children and families affected by AIDS. Two dedicated FCAN counselors helped her navigate the guardianship application process, connect with other grandparents in similar situations and sign Jordan and Jason up for a 10-week support group so they could be around other kids who’d lost their parents to AIDS. Nora doesn’t know how she would’ve gotten through it all without those FCAN counselors. “Having the opportunity to cry and get support from people who were going through what I was going through was a real blessing,” she tells me.

When it came time to disclose to Jordan and Jason how their parents died, Nora once again turned to her FCAN family. For five years, she dreaded having that conversation, but she knew it was important.

“For a long time, I was reluctant to tell them. I didn’t think they were prepared,” Nora says. It wasn’t until she and an FCAN counselor practiced and prepared for the talk that she felt ready to sit her grandsons down in their home and fi nally tell them what happened.

“Afterward, I asked them if they were OK, and they said yeah, but I don’t know what the impact will be,” she continues, her voice trailing off.

Like Jordan and Jason, I was very close to my grandmother before she died. She lived in a rural part of South Carolina that seemed shrink-wrapped in the 1960s. I spent long stretches of my early summers playing in her rose garden, picking plums and grapes, and climbing trees.

As with Jordan and Jason, my sister and I are five years apart. Although, as the younger sibling, I take special issue with Jordan’s description of younger brothers as “annoying.”

And also like them, I know intimately the pain of losing both parents to AIDS at a very young age.

My father contracted HIV while he was incarcerated.

Upon his release, he transmitted the virus to my mother.

Less than two years after returning home, my father died of AIDS-related complications. Two years later, in 1992, I lost my mother to AIDS. Both of my parents were dead by the time that I was 7 years old. Although I vaguely remember my father’s passing, nothing really prepared me for my mother’s death when it happened.

Not the nurse’s horror upon arriving at our single-wide trailer to fi nd my mother sprawled out on the kitchen floor, covered in half-cooked white rice. She’d been trying to make dinner for my sister and me but had lost all the strength in her legs.

As her legs gave way, she’d knocked the simmering rice onto herself and the floor.

Not the weeks that she spent in the hospital as doctors monitored her “iron and blood levels.” I would much later come to fi nd out that during these visits, which caused my sister and me to live with our maternal aunts, my mother was undergoing blood transfusions.

Not even my mother’s bedridden state, which rendered her unable to attend her own mother’s funeral, had prepared me for the inevitability that she was going to die.

But there, at her hospital bedside, at the prompt from an aunt, I said goodbye to my mother for the last time as I placed my right hand in her left. She turned her head to look at me and mouthed the words I love you.

The next morning, she died.

“SUPPORT FROM PEOPLE WHO WERE GOING THROUGH WHAT I WAS GOING THROUGH WAS A REAL BLESSING.”

AS I INTERVIEWED NORA AND HER GRANDSONS for this article, it struck me how similar their story is to mine.

I’m also HIV negative and lost my parents to AIDS.

AS JORDAN AND JASON KNOW—OR AT THE VERY least are learning—the loss of one’s parents to an AIDSrelated illness isn’t the end of AIDS. Like all other deaths, the loss is final and permanent and can overshadow birthdays, anniversaries and other milestones, making them feel incomplete and lacking. But the loss of a parent to AIDS also forces one to learn to navigate a world where the stigma

poz.com SEPTEMBER 2018 POZ 33

YOU MATTER AND SO DOES YOUR HEALTH

That’s why starting and staying on HIV-1 treatment is so important.

WHAT IS DESCOVY®?

DESCOVY is a prescription medicine that is used together with other HIV-1 medicines to treat HIV-1 in people who weigh at least 77 lbs (35kg). DESCOVY is not for use to help reduce the risk of getting HIV-1 infection. DESCOVY combines 2 medicines into 1 pill taken once a day. Because DESCOVY by itself is not a complete treatment for HIV-1, it must be used together with other HIV-1 medicines.

DESCOVY does not cure HIV-1 infection or AIDS. To control HIV-1 infection and decrease HIV-related illnesses, you must keep taking DESCOVY. Ask your healthcare provider if you have questions about how to reduce the risk of passing HIV-1 to others. Always practice safer sex and use condoms to lower the chance of sexual contact with body fluids. Never reuse or share needles or other items that have body fluids on them.

IMPORTANT SAFETY INFORMATION

What is the most important information I should know about DESCOVY? DESCOVY may cause serious side effects: • Worsening of hepatitis B (HBV) infection. DESCOVY is not approved to treat HBV. If you have both HIV-1 and HBV and stop taking DESCOVY, your HBV may suddenly get worse. Do not stop taking DESCOVY without first talking to your healthcare provider, as they will need to monitor your health.

What are the other possible side effects of DESCOVY? Serious side effects of DESCOVY may also include: • Changes in your immune system. Your immune system may get stronger and begin to fight infections.

Tell your healthcare provider if you have any new symptoms after you start taking DESCOVY. • Kidney problems, including kidney failure. Your healthcare provider should do blood and urine tests to check your kidneys. Your healthcare provider may tell you to stop taking DESCOVY if you develop new or worse kidney problems.

• 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 effect of DESCOVY is nausea.

Tell your healthcare provider if you have any side effects that bother you or don’t go away.

What should I tell my healthcare provider before taking DESCOVY? • All your health problems. Be sure to tell your healthcare provider if you have or have had any kidney or liver problems, including hepatitis virus infection.

• All the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. Other medicines may affect how DESCOVY works. Keep a list of all your medicines and show it to your healthcare provider and pharmacist.

Ask your healthcare provider if it is safe to take DESCOVY with all of your other medicines.

• If you are pregnant or plan to become pregnant.

It is not known if DESCOVY can harm your unborn baby. Tell your healthcare provider if you become pregnant while taking DESCOVY. • If you are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed. HIV-1 can be passed to the baby in breast milk.

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.

Please see Important Facts about DESCOVY, including important warnings, on the following page.

Ask your healthcare provider if an HIV-1 treatment that contains DESCOVY® is right for you.

DVYC0085_A_7-875x10-5_POZ_Shane_r1v1jl.indd Custom V 2 PZA496042A.indd 1

7/18/18 1:12 PM

PZA496042B.indd 1

7/2/18 3:45 PM 7/18/18 1:12 PM

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

(des-KOH-vee) MOST IMPORTANT INFORMATION ABOUT DESCOVY

POSSIBLE SIDE EFFECTS OF DESCOVY

DESCOVY may cause serious side effects, including: • Worsening of hepatitis B (HBV) infection. DESCOVY is not approved to treat HBV. If you have both HIV-1 and HBV, your HBV may suddenly get worse if you stop taking DESCOVY. Do not stop taking DESCOVY without first talking to your healthcare provider, as they will need to check your health regularly for several months.

DESCOVY can cause serious side effects, including: • Those in the “Most Important Information About DESCOVY” section.

• Changes in your immune system.

• New or worse kidney problems, including kidney failure.

• 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 effect of DESCOVY is nausea.

These are not all the possible side effects of DESCOVY. Tell your healthcare provider right away if you have any new symptoms while taking DESCOVY. Your healthcare provider will need to do tests to monitor your health before and during treatment with DESCOVY.

ABOUT DESCOVY • DESCOVY is a prescription medicine that is used together with other HIV-1 medicines to treat HIV-1 in people who weigh at least 77 lbs (35kg). DESCOVY is not for use to help reduce the risk of getting HIV-1 infection.

• DESCOVY does not cure HIV-1 or AIDS. Ask your healthcare provider about how to prevent passing HIV-1 to others.

BEFORE TAKING DESCOVY Tell your healthcare provider if you: • Have or had any kidney or liver problems, including hepatitis infection.

• Have any other medical condition.

• Are pregnant or plan to become pregnant.

• Are breastfeeding (nursing) or plan to breastfeed.

Do not breastfeed if you have HIV-1 because of the risk of passing HIV-1 to your baby.

Tell your healthcare provider about all the medicines you take: • Keep a list that includes all prescription and over-the-counter medicines, vitamins, and herbal supplements, and show it to your healthcare provider and pharmacist.

• Ask your healthcare provider or pharmacist about medicines that should not be taken with DESCOVY.

GET MORE INFORMATION • This is only a brief summary of important information about DESCOVY. Talk to your healthcare provider or pharmacist to learn more.

• Go to DESCOVY.com or call 1-800-GILEAD-5 • If you need help paying for your medicine, visit DESCOVY.com for program information.

HOW TO TAKE DESCOVY • DESCOVY is a one pill, once a day HIV-1 medicine that is taken with other HIV-1 medicines.

• Take DESCOVY with or without food.

DESCOVY, the DESCOVY Logo, LOVE WHAT’S INSIDE, GILEAD, and the GILEAD Logo are trademarks of Gilead Sciences, Inc., or its related companies. All other marks referenced herein are the property of their respective owners. Version date: September 2017 © 2017 Gilead Sciences, Inc. All rights reserved. DVYC0085 11/17

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ESA

Nora and her grandsons, Jordan (left) and Jason, are still grappling with their loss.

around HIV and AIDS is still very real and can never not be part of one’s story.

It wasn’t until well after college that I felt comfortable telling people that my parents died of AIDS-related complications. When I was Jordan’s and Jason’s age, people always assumed that my biological parents were attending parentteacher conferences, helping me with my homework at night or giving me money to spend on frivolous things, and I let them. I did so because I wanted to be seen as normal.

What teenager doesn’t?

For me, being Black, gay and terrible at sports in rural South Carolina was isolating enough. I didn’t need or want to be any more different. But deep down, I always knew lying about my parents was wrong. Lying also seemed to make the memories fade faster. It wasn’t until I met other people who were living with HIV and AIDS or who had lost their parents to AIDS that I realized how much pain and heartache I had caused myself and my family.

Today, Jordan, 16, and especially Jason, 11, have few memories of their parents. When asked what, if anything, he remembers about his mother, Jordan speaks in generalities.

“She was kind and nice, nothing bad,” he says. However, when asked how he feels about her death, his pain is much more palpable. “I miss her every day. Every day is harder than the other. I think about her all the time. Even when I’m not thinking about her, memories will pop up.”

When I speak with Nora, Jordan and Jason, it’s obvious

that they’re all still grappling with their loss. Part of me wishes I could tell Jordan and Jason that one day they will get over the death of their parents. That in a fi nite number of years, their yearning to sit on the couch and watch TV with their mom again or to visit her favorite restaurants will subside and magically turn into joy. But sadly, that wouldn’t be the truth.

In fact, you never get over the loss of a parent, especially if he or she was taken from you at a young age. You’re never not looking at the door hoping that your mother or father one day appears and ends the painful charade that has been your reality. After more than two decades, I still avoid Facebook, Twitter and Instagram on Mother’s Day and Father’s Day, and I know I’m not the only one.

Instead, what I would tell Jordan and Jason, and every other kid missing his or her parents, is to hold on to the memories you made. You can keep your parents alive in spirit by speaking their names and their truths. By sharing your story, you are dismantling stigma and uprooting shame, and that is powerful.

And most important, give yourself and your family space and time to grieve. It’s the only way to harness your innermost strength.

“A lot of people said that I was doing a wonderful thing by raising my grandsons,” says Nora. “Eventually, I realized that I saved them, but they saved me too. I needed them.”

And the world needs more Noras. ■

poz.com SEPTEMBER 2018 POZ 37

THE ANNUAL FUNDRAISER COMMEMORATES ITS 25TH ANNIVERSARY.

BY ORIOL R. GUTIERREZ JR. AND CAMERON GORMAN

IN 2018, LIFE BALL—ORGANIZED BY LIFE+, AN INDEPENDENT NONprofit organization based in Vienna—marked its 25th anniversary in the fight to end HIV/AIDS. Held every year at Vienna City Hall, the dazzling event took place on Saturday, June 2.

The glittering fundraiser has become one of the world’s most important AIDS 38 POZ SEPTEMBER 2018 poz.com

TRK BOTH IMAGES; COURTESY OF LIFE BALL/JUERGEN HAMMERSCHMID

Scenes from the opening ceremony, including a solo performance (right) by Conchita as Maria von Trapp from The Sound of Music

charity events. Celebrities from the worlds of fashion, entertainment and politics support Life Ball, and proceeds benefit global aid projects and their international partners.

This year, for the first time, HIV groups in the United States will also receive funding.

The event raised over €1.3 million ($1.5 million) to fund HIV groups in Austria and around the world, according to an email to POZ from the Life Ball press office. poz.comSEPTEMBER SEPTEMBER2018 2017 POZ POZ 39 39 poz.com

Groups that received funds this year include amfAR, The Foundation for AIDS Research; the Charlize Theron African Outreach Project; Broadway Cares/Equity Fights AIDS; The Elizabeth Taylor AIDS Foundation; Sentebale; the Dream for Africa Foundation; and various local Austrian HIV organizations.

This year’s leitmotif (recurring theme) paid homage to the 1965 musical fi lm The Sound of Music, which was shot on location in Vienna.

According to LIFE+, the theme was chosen both to celebrate the grace of Austria and to allow for reflection on the notion that “security, health, acceptance and freedom are not obvious even in 2018.”

Several related events took place in the days before and after the opening ceremony.

Oscar winner Charlize Theron received the Swarovski Crystal of Hope Award on Thursday, May 31, in Vienna. She accepted d the award on behalf of her namesake organization, the Charlize Theron Africa Outreach Project, for its innovative work in the field. The project promotes HIV prevention among youth through self-empowerment.

The next day, Theron met participants of amfAR’s Epic Ride to Life Ball for brunch in Salzburg. Led by amfAR CEO Kevin Frost, riders—including g several other VIPs, actors and d actresses, including Oscar win-ner Adrien Brody—began theirr four-day, 700-mile-plus HIV/AIDS S awareness motorcycle tour on n Wednesday, May 30, in Zurich and nd arrived in Vienna on June 2, in time me to attend the opening ceremony. y.

One of the projects Life Ball alll supports is amfAR’s TREAT Asia siaa Pediatric HIV/AIDS Program, m, which focuses on improving the he health and lives of children and nd adolescents living with HIV V across the Asia-Pacific region. n.

LIFE+ has provided more than n $6 million over the years to o this initiative.

The LIFE+ Celebration Concert, a sister event to Life Ball, features Austrian and international theater and opera stars; the concert also took place on June 1, at the Burgtheater

40 POZ SEPTEMBER 2018 poz.com m

COURTESY OF JAVIER MUÑOZ/JOSH LEHRER

Clockwise from top left: Kimberly Davis, lead singer of Chic, gives an impromptu performance on the Life Ball plane from New York City to Vienna, which carried special guests and performers; the red ribbon covers Vienna City Hall’s facade; LIFE+ board chair Gery Keszler (left) and amfAR CEO Kevin Frost; Charlize Theron accepts the Swarovski Crystal of Hope from Gery Keszler (center) and Helene von Damm, former U.S. ambassador to Austria; model Eva Herzigová poses in front of her photo for the LIFE+ “Know Your Status” campaign; Kelly Osbourne disembarks from the Life Ball plane in Austria; a Life Ball attendee in one of the many extravagent costumes typical at the event; Adrien Brody arrives after amfAR’s Epic Ride to Life Ball; Paris Jackson on the Life Ball red carpet; Patti LaBelle surrounded by Life Ball attendees

poz.com SEPTEMBER 2018 POZ 41

42 POZ SEPTEMBER 2018 poz.com

fashion show by 25 designers, including Jean Paul Gaultier, Kenzo La Collection Memento and Elie Saab, all of whom displayed their visions of “the most beautiful day in life.”

One of the major initiatives that LIFE+ champions throughout the year is its “Know Your Status” awareness campaign. Regan Hofmann, former POZ editor-in-chief and current policy officer at the U.S. liaison office of the Joint United Nations Programme on HIV/AIDS (UNAIDS) in Washington, DC, spoke about the campaign.

“Know Your Status” promotes HIV testing through dramatic images of body-painted celebrities, including actor and model Aiden Brady, model Eva Herzigová and Paris Jackson, daughter of Michael Jackson.

The campaign supports the fi rst part of the UNAIDS “90-90-90” objective—which aims to have 90 percent of people aware of their HIV status by 2020—by helping expand the number of testing sites in Austria.

During the opening ceremony, Jackson also represented her godmother’s namesake charity, The Elizabeth Taylor Life Ball 2018 attendees dance the night away at Vienna City Hall.

PREVIOUS PAGES: COURTESY OF LFE BALL AND (DAVIS) ALEXANDER HAESSNER; (CITY HALL AND OSBOURNE) RAINER GREGOR ECKHARTER; (KESZLER AND FROST) MIKE VOGL; (THERON, KESZLER AND VON DAMM) JUERGEN HAMMERSCHMID; (HERZIGOVÁ) ISABELLA FRITSCHE; (COSTUME) ALEXANDER LOIDL; (BRODY, JACKSON AND LABELLE) STEPHAN BRUECKLER

in Vienna. “Home is where no one has ever been” was the theme of this year’s concert, which explored through music and theater many creative and unexpected notions of “home.”

The main event kicked off with the LIFE+ Solidarity Gala, which took place inside Vienna City Hall, hours before the opening ceremony. The gala banquet for exclusive guests featured a champagne reception, a live auction and music performances and was cohosted by The Global Fund to Fight AIDS, Tuberculosis and Malaria.

At the end of a 130-meter-long red carpet that included a style contest, the Life Ball opening ceremony showcased all sorts of theatrics inspired by The Sound of Music. Among the creative displays were a performance of “Do Re Mi” by a choir of boys and a rendition of “Lady Marmalade” by Patti Labelle accompanied by a choir of nuns.

The performances, including a dance by debutants outfitted in extravagant versions of traditional costumes, were interspersed with speeches and presentations delivered against a verdant background.

Among them was the presentation of a wedding-themed

THESE PAGES: (DANCE) COURTESY OF LIFE BALL/MAXIMILIAN ROEDER; (ALL OTHERS) TWITTER/@LIFEBALL_OFFICIAL

AIDS Foundation. She received the LIFE+ Award along with Joyce Jere, the Global AIDS Interfaith Alliance (GAIA) country director in Malawi, on LIFE BALL MOMENTS THROUGH THE YEARS, clockwise from top left: performers in 1994; behalf of the GAIA Elizabeth Helena Christensen in 1993; Elton John in 2002; Taylor Mobile Clinics.

Bill Clinton and Fran Drescher in 2009; Sharon Stone in 2006; Donatella Versace and Gery Olympic skier Gus Kenworthy Keszler in 2005 also spoke at the opening ceremony in support of Broadway Cares/Equity Fights AIDS. After performances of “Edelweiss” (sung by 2014 EuroBut the celebration didn’t end there. A program for vision winner Conchita as bride Maria von Trapp) and youth ages 16 and up, Life Ball Next Generation, was held “Climb Every Mountain,” the doors to Vienna City Hall on Sunday, June 3, at the same venue. The event included were opened to all Life Ball attendees, and dancing and performances by Dutch musician Lady Bee and Austrian other activities rocked the neo-Gothic space. duo Wild Culture, among others.

Performances by Beyoncé’s professional dancers Shernita “A global network has been created in over two deAnderson and Miles Keeney and musicians such as Betty cades,” proclaimed a Life Ball press release, “with a comWho further enlivened the dynamic atmosphere. Caitlyn mon objective: To put an end to HIV and AIDS.” Until Jenner, Kelly Osbourne and Drag Race veteran Nina Flowers then, Life Ball will continue to live up to this mission in all its colorful glory. ■ were among the many other celebrities in attendance.

poz.com SEPTEMBER 2018 POZ 43

HEROES

BY ALICIA GREEN

Aging With HIV

44 POZ SEPTEMBER 2018 poz.com

Lillibeth Gonzalez empowers people living with HIV.

LOLA FLASH

Lillibeth Gonzalez proudly celebrated her 26th “HIVersary” on June 2, marking yet another milestone for the woman who has overcome addiction, domestic violence, stigma and the AIDS-related deaths of three siblings.

“I went through hell and back to get to where I’m at today,” says Gonzalez, who is a native New Yorker. “But I’m so happy because I’m living and aging with HIV.” In 1992, Gonzalez tested HIV positive.

Inspired to persevere by her young son, she became mentally strong while physically suffering.

With the epidemic raging on, Gonzalez refused to sit idly by, so she underwent training on HIV from several health and wellness organizations, including Gay Men’s Health Crisis (GMHC) and Exponents.

“I informed myself so I could help others make informed choices,” Gonzalez says.

For 25 years, Gonzalez has been a client at GMHC, the world’s first HIV organization.

She has also worked there as a community health educator since 2006.

“GMHC was the first place I went to,” she says. “I want to do for others what GMHC did for me.”

She empowers people living with HIV to become educated and to help raise HIV awareness. She often hosts forums, workshops and conferences targeting New York’s most underserved communities.

Gonzalez also shares information on post-exposure prophylaxis (PEP), pre-exposure prophylaxis (PrEP) and the concept of “Undetectable = Untransmittable” (U=U).

One of her goals is to reach out to the Latino community, which she believes harbors a lot of HIV-related stigma.

“They just gravitate toward me,” Gonzalez says. “When I start speaking Spanish, I really start speaking their language and their attitude.”

For the past 10 years, Gonzalez has regularly distributed condoms and information on safer-sex practices to patrons of a local beauty salon.

In April, Gonzalez held a one-day event for people age 50 and older living with HIV, another population she is passionate about helping.

And in September, you can find her in Orlando giving a presentation on aging and HIV at the 2018 United States Conference on AIDS (USCA).

“My goal,” says Gonzalez, “is to end the epidemic by 2020, like Governor Andrew Cuomo said.”

SURVEY

7

Do you take prescription medication for any health conditions other than HIV?

❑ Yes 8

GETTING OLDER It’s estimated that by 2020, more than 70 percent of Americans living with HIV will be age 50 or older. This is mostly because people are living much longer with HIV thanks to effective antiretroviral therapy. POZ wants to know: How are you aging with HIV?

9

2

10 How would you describe your support network?

❑ Excellent ❑ Good ❑ Fair ❑ Poor

12 What year were you born?__ __ __ __ 13 What is your gender?

❑ Male ❑ Female ❑ Transgender ❑ Other 14 What is your sexual orientation?

❑ Straight ❑ Bisexual ❑ Gay/lesbian ❑ Other 15 What is your ethnicity? (Check all that apply.)

❑ American Indian or Alaska Native ❑ Arab or Middle Eastern ❑ Asian ❑ Black or African American ❑ Hispanic or Latino ❑ Native Hawaiian or other Pacific Islander ❑ White ❑ Other (please specify): ___________________

Do you have an undetectable viral load?

Are you resistant to any class of drugs?

❑ Yes ❑ No ❑ I don’t know.

5

How would you rate your overall physical health?

16 What is your current level of education?

❑ Excellent ❑ Good ❑ Fair ❑ Poor

ISTOCK

6

Do you believe there are adequate services in your community for people living with HIV over 50?

❑ Yes ❑ No ❑ I don’t know.

❑ Yes ❑ No 4

Are you dealing with any substance abuse issues?

How long have you been taking HIV meds?

❑ More than 25 years ❑ 20–25 years ❑ 15–20 years ❑ 10–15 years ❑ 5–10 years ❑ Less than 5 years ❑ I am not taking HIV meds.

3

Are you dealing with any of these other health conditions? (Check all that apply.)

❑ Yes ❑ No

How long have you been living with HIV?

❑ More than 25 years ❑ 20–25 years ❑ 15–20 years ❑ 10–15 years ❑ 5–10 years ❑ Less than 5 years

❑ No

❑ Cancer ❑ Diabetes ❑ Cardiovascular disease ❑ Kidney disease ❑ Cognitive disorders ❑ Liver disease ❑ Depression ❑ Osteoporosis ❑ Other (please specify): ___________________

11 1

❑ Some high school ❑ High school graduate ❑ Some college ❑ Bachelor’s degree or higher

How would you rate your overall mental health?

❑ Excellent ❑ Good ❑ Fair ❑ Poor

17

What is your ZIP code? __ __ __ __ __

Please fill out this confidential survey at poz.com/survey or mail it to: Smart + Strong, ATTN: POZ Survey #230, 212 West 35th Street, 8th Floor, New York, NY 10001

PZA496031.pdf 07.18.2018 12:17

ESA