POZ December 2018

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PEOPLE CELEBRATING 50 AND OVER

From left: Rosa Rivera, Lillibeth Gonzalez, Bryan Jones, Pat Kelly and Rob Quinn

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

H E A L T H ,

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PEOPLE CELEBRATING 50 AND OVER

From left: Rosa Rivera, Lillibeth Gonzalez, Bryan Jones, Pat Kelly and Rob Quinn

From left: John Tenorio, Reginald T. Brown, Wanda Brendle-Moss, Eric Jannke and MoisĂŠs Agosto-Rosario

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See Inside

CONTENTS

EXCLUSIVELY ON

POZ.COM

HIV-negative ally Krishna Stone celebrates 25 years at GMHC.

#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.

D

POZ BLOGS

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.

D

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.

POZ DIGITAL

READ THE PRINT MAGAZINE ON YOUR COMPUTER OR TABLET

30 THE POZ 100 Our ninth annual list honors 100 people living with HIV who are 50 and over and making a difference in the fight against AIDS. They inspire all generations and prove that advocacy knows no age limit.

3 FROM THE EDITOR

20 SPOTLIGHT

A Touch of Gray

The social media buzz on USCA 2018

4 POZ Q+A

25 EVERYDAY

Moisés Agosto-Rosario of NMAC reflects on the importance of supporting people living with HIV who are 50 and over.

Milestones in the epidemic

7 POZ PLANET PrEP ads from Gilead Sciences and local health groups • our latest book roundup includes two Duets from Visual AIDS and a memoir by Rentboy.com’s Tom Weise • an oral history of artists who created work during the early epidemic • three social media posts about HIV that went viral

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

In “I’ve Said It,” long-term survivor Bob Leahy reflects on ways the virus defines our lives, and in “Long Forgotten,” Joe Mejía recaps the contributions of Buddies, the first feature film about AIDS.

26 RESEARCH NOTES

How well do condoms lower HIV risk? • new data on a monthly injectable treatment • research on achieving posttreatment control of HIV • rates of depression and anxiety in people living with HIV

28 CARE AND TREATMENT Viral suppression disparities in the United States • do ARVs boost blood pressure?

• treating heavy drinking • hepatitis C and substance abuse on the brain

60 HEROES Krishna Stone was at the first AIDS Walk New York in 1986, and her advocacy has never ceased. Even the governor has taken note!

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. 232. 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.

COVER: JENSEN LARSON; THIS PAGE: (STONE) BILL WADMAN; (GAVEL/BOOKS AND MEGAPHONE) ISTOCK; (SPEECH BUBBLES) THINKSTOCK

PERSONAL PERSPECTIVES

FROM THE EDITOR

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A Touch of Gray

I

RECENTLY MARKED MY 48TH birthday. Although it’s not such a remarkable achievement, I am pleased with aging nonetheless.

After testing HIV positive in 1992, I didn’t think I would see 30, so I greatly cherish each passing year.

Each birthday is an achievement.

My fascination with the privilege of getting older even makes having gray hair and wrinkles feel good. The visible signs of aging reflect my joy in having made it this far in my journey living with HIV. I know all too well that so many others were sadly denied this simple privilege.

As I celebrate being alive, I’ll continue to carry my memories of those I lost and I’ll contribute what I can to others. One of the milestones that I’m looking forward to is turning 50. Lots of folks dread that number, but for me it would be yet one more victory in my personal battle against HIV. Thankfully, there are many of us living with HIV in the United States who are 50 and over—about half of us, in fact. By 2030, it’s believed that about 70 percent of us will be 50 and over. Increasingly, issues related to aging are also connected to HIV. So it’s with those statistics in mind that we decided to dedicate the 2018 POZ 100 list to celebrating advocates living with HIV who are 50 and over. This demographic faces unique challenges, but they also have specific experiences to offer the community. Go to page 30 to read more.

As always, this year’s POZ 100 is not a definitive list. However, we do believe that it’s a representative list of the community.

That said, we do want to acknowledge the special participation in the 2018 POZ 100 by many of the scholars from the NMAC HIV 50+ Strong and Healthy program.

Of the numerous 50+ scholars on this year’s POZ 100, nine grace our cover in addition to being showcased in the POZ 100 feature article. In alphabetical order, they are: Wanda Brendle-Moss, Reginald T. Brown, Lillibeth Gonzalez, Eric Jannke,

Bryan Jones, Pat Kelly, Rob Quinn, Rosa Rivera and John Tenorio.

A 10th person is also seen on the cover and in the article, but he isn’t a 50+ scholar. His name is Moisés Agosto-Rosario, and he’s the treatment director for NMAC. In that role, he oversees the 50+ program. In addition to his in-depth professional knowledge of HIV, Moisés has extensive personal experience with the virus. He tested positive in 1986.

This isn’t even his first time on the cover.

Moisés was first highlighted on the cover of the May 1997 issue. Not only is he a longtime friend of POZ, he is also an elder of the HIV community. I had the pleasure of speaking with Moisés for the POZ Q&A in this issue.

Go to page 4 to read his insights.

This year is our ninth annual POZ 100.

Sometimes the list is reserved for only HIVpositive people. Sometimes it’s open to all.

Since this year’s list was for those living with the virus, we wanted to somehow honor the efforts of HIV-negative advocates who are 50 and over. In that spirit, go to page 60 to read about GMHC’s Krishna Stone.

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

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

poz.com DECEMBER 2018 POZ 3

POZ Q+A

BY ORIOL R. GUTIERREZ JR.

HIV 50+ scholars at USCA 2017 in Washington, DC

STRONG & HEALTHY

M

OISÉS AGOSTO-ROSARIO IS THE TREATMENT DIRECTOR OF NMAC (National Minority AIDS Council). He oversees programs that boost HIV treatment and biomedical prevention efforts at communitybased organizations. He has held this role since 2011, when he rejoined NMAC after leaving over a decade before. In the 1990s, he was director of treatment education and advocacy at NMAC and editor of SIDA Ahora (AIDS Now), a Spanish-language magazine from the People With AIDS Coalition of New York.

Before his current role, Agosto-Rosario oversaw grant making for the International Treatment Preparedness Coalition, a project of the Tides Center. Previously, he managed educational and marketing programs at Publicis Healthcare Communications Group. In addition to his more than three decades as a senior-level adviser on health care and HIV, Agosto-Rosario is a long-term survivor. He tested HIV positive in 1986.

As part of his current role, he oversees the NMAC HIV 50+ Strong & Healthy program. Nine of the 50+ scholars are on the cover of this issue, which showcases our annual POZ 100. This year’s list celebrates advocates living with HIV who are 50 and over. Agosto-Rosario is also on this cover. He first appeared on the cover of POZ in 1997.

What does NMAC’s treatment division do?

We work on both policy and programming. We educate people about HIV treatment and biomedical prevention. We also do some work around HIV care but only as it relates to clinical or biomedical issues regarding HIV treatment.

Our policy work involves having dialogue with government-sponsored networks of vaccine or clinical research. In terms of programming, we work with service providers

4 POZ DECEMBER 2018 poz.com

to reach the community of people living with HIV. Our programs include policy education on pre-ex posure prophyla x is (PrEP), our 50+ scholars and an effort we call Strong Communities that looks at the social drivers of HIV. Our division also coordinates the national Biomedical HIV Prevention Summit.

Can you tell us more about your work on PrEP and the social drivers of HIV?

The original goal of our PrEP program was to go to six cities in the South and recruit service providers, educators and advocates to help them form working groups following the model of successful PrEP working groups in Los Angeles, San Francisco and New York City.

We are now in the third year of that program. We have kept the people we recruited in dialogue, which led us to a learning collaborative with them that identified best practices around PrEP education and advocacy. That report will be published during our prevention summit in December.

COURTESY OF NMAC

NMAC offers support and engagement opportunities to advocates living with HIV who are 50 and over.

Through our Strong Communities program we have done research on the intersections between the social determinants of health and HIV treatment and prevention within the framework of race, reflecting NMAC’s mission.

We conducted needs assessments using focus groups and one-on-one meetings with service providers and HIV groups in the South. What are the practices we need to keep in mind to make sure we address the intersectionality?

From that project, also in its third year, we were able to create a tool kit to help HIV organizations start their own intersectionality conversations. We also will be launching the tool kit before our prevention summit.

JENSEN LARSON

Can you elaborate on the 50+ program?

Based on the estimate that about 50 percent of people living with HIV in the United States are 50 and over—and that by 2030 that total will increase to 70 percent—we wanted to develop a program to address the needs of this population.

The program started three years ago.

It was important to focus on this population because they were going to be the majority, but in addition, this is the first cohort getting older with HIV, so there are clinical issues regarding comorbidities. There is still a lot we need to learn about people aging with HIV. Even though our comorbidities are similar to diseases experienced by all people as they age, they start earlier in the HIV population. There is a lot of new information that we need to gather.

In our needs assessment for this program, we found that isolation and depression are big problems. We realized that along with data collection we also needed to develop networks and leaders in this group who could be educated on issues related to aging with HIV. In addition to training, part of bringing the 50+ scholars to the United States Conference on AIDS (USCA), which is coordinated by NMAC, is to start building networks and creating new leaders.

We provide scholarships to about 50 people to attend USCA through the program. We receive hundreds of applications, so it’s a competitive process. At USCA, they learn about aging, clinical

issues and other related topics, but they also have the opportunity to network among themselves.

We give them platforms at USCA to do their ow n presentations. A fter USCA, we give out 10 mini grants to 10 scholars who want to do specific projects in their communities to address HIV among those who are 50 and over.

Please tell us more about the national Biomedical HIV Prevention Summit.

This is the third year of the summit. It will be held December 3 and 4 in Los Angeles. It’s focused on prevention, but the inspiration came from an earlier event by the NMAC treatment division.

The National AIDS Treatment Advocates Forum (NATAF) conference started in ’96 and went on for over a decade.

Moisés AgostoRosario

ones. In the beginning, we didn’t have good treatments, so we had to become involved in advocacy to get better treatments—and that activism worked.

Back then, I thought I was just borrowing time. I’m obviously glad that things have improved, but I never thought the fight was going to be this long.

It’s interesting to me how even today some of us, myself included, are still coming to terms with understanding that even though it’s still the same disease, it’s a different context now. As a result of people living longer, it’s amazing to see how that affects the kind of advocacy that needs to be out there.

The new generations have the blessing of knowing that they have a long life ahead of them. The urgency of becoming involved as an HIV-positive person

“There is still a lot we need to learn about people aging with HIV.”

The NATAF meeting was created out of the need to educate patients and advocates on new treatments, side effects, becoming their own advocates, etc.

So the prevention summit came out of a similar idea that in the age of biomedical prevention we were going to need a forum that would provide the same kind of education and community.

An important point to make is that the summit is not another USCA. We want it to be more intimate. We want to make sure the summit continues to provide more face-to-face opportunities for all stakeholders on how to better implement biomedical strategies in the community.

As a long-term HIV survivor and a longtime advocate, how have you seen AIDS activism change?

Early on it was clear that it was advocacy about saving yourself and your loved

because your life is on the line is not necessarily there anymore. Social justice is a primary motivator now.

What are your hopes for the epidemic?

This is a good time in the epidemic as far as treatment is concerned. We have a bunch of HIV medications that keep us healthy. There are more meds in the pipeline that will be even better. There is a lot happening with biomedical prevention and cure research.

The challenges that we are presented with now are about getting our health system prepared for all the science that is coming. How can we make sure our health system responds adequately to the new developments in treatment?

I came back to NMAC because I wanted to make sure that we would not miss the bus on biomedical prevention and treatment research. I’m optimistic. ■

poz.com DECEMBER 2018 POZ 5

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CAN15703-00_HouseAd.pgs 12.20.2017 13:18

POZ PLANET

BY TRENT STRAUBE

AD AGE Local AIDS organizations and health departments have been at the forefront of PrEP awareness campaigns (often with funding by pharma). A few of the standouts from 2018:

(“I’M ON THE PILL” AND “HEALTHYSEXUAL”) COURTESY OF GILEAD SCIENCES; (“LET’S TALK ABOUT PREP”) COURTESY OF YOUTUBE/HOWARD BROWN HEALTH; (“PREP’D AF”) COURTESY OF LOS ANGELES LGBT CENTER; (“¡LISTOS!”) COURTESY OF NEW YORK CITY HEALTH DEPARTMENT; (“PREP SUPPORTS”) COURTESY OF SAN FRANCISCO HEALTH DEPARTMENT; (“THINK ABOUT PREP”) COURTESY OF WASHINGTON, DC, HEALTH DEPARTMENT

In this “Let’s Talk About PrEP” music video, the talented team at Chicago’s Howard Brown Health give the Salt-N-Pepa track a prevention twist, baby.

Images from the “I’m on the Pill” and (inset below) “Healthysexual” campaigns

ON THE PILL AND ON TV Truvada drugmaker Gilead Sciences promotes HIV prevention and PrEP. In 2012, the Food and announce, “I’m on the Drug Administration pill…but it’s not birth approved daily HIV control.” Airing on med Truvada as prebroadcast TV and other exposure prophylaxis media platforms, the (PrEP). But it wasn’t ads directly promote until this year that its Truvada. What’s more, manufacturer, Gilead like Gilead’s earlier PrEP Sciences, launched campaigns, this one TV ad campaigns to features actors repreActors in the ad campaigns represent populations at higher risk for HIV. boost awareness of senting populations at the daily tablet that higher risk for HIV: men prevents people from who have sex with men, contracting the virus. The first spots, transgender women (notably those of color) which appeared in early June as part of a and Black women who have sex with men. campaign titled “Healthysexual,” didn’t “The goal of this new awareness cameven mention PrEP; instead, they focused paign is to encourage more people to talk on HIV prevention, testing and sexual with a health care provider about their health in general. A related video series HIV risk and Truvada for PrEP as a potentitled MyHealthysexualStories featured tial HIV prevention option,” says Douglas celebrity advocates Julian Walker, Carmen M. Brooks, senior director for community Carrera and Daniel Franzese sharing stories engagement at Gilead Sciences. “We about addressing stigma and preventing hope to empower people with information HIV and sexually transmitted infections. and tools to have an informed discussion Then came the aptly named “I’m on the with their health care provider about their Pill” campaign, in which a series of actors individual health.”

The Los Angeles LGBT Center tapped gay music artist and model Milan Christopher to urge gay and bisexual Black men to be “PrEP’d AF” against HIV. “!Listos!” (“Ready!”), the first-ever PrEP campaign “conceived in Spanish,” debuted in New York City and was created by the Latino Commission on AIDS and the city health department.

The San Francisco health department launched the “PrEP Supports” campaign to “reach out to African Americans, improve access and overcome disparities.”

With its fun and racy “Think About PrEP” campaign, the Washington, DC, health department had us thinking about you-know-what!

poz.com DECEMBER 2018 POZ 7

SYMTUZA™ is a prescription medicine that is used without other antiretroviral medicines to treat Human Immunodeficiency Virus-1 (HIV-1) infection in adults who: • have not received anti-HIV-1 medicines in the past, or • when their healthcare provider determines that they meet certain requirements.

HIV-1 is the virus that causes Acquired Immune Deficiency Syndrome (AIDS).

IMPORTANT SAFETY INFORMATION WHAT IS THE MOST IMPORTANT INFORMATION I SHOULD KNOW ABOUT SYMTUZA™?

SYMTUZA™ can cause serious side effects including: • Worsening of hepatitis B virus infection. Your healthcare provider will test you for hepatitis B virus (HBV) before starting treatment with SYMTUZA™. If you have HBV infection and take SYMTUZA™, your HBV may get worse (flare-up) if you stop taking SYMTUZA™. o Do not stop taking SYMTUZA™ without first talking to your healthcare provider. o Do not run out of SYMTUZA™. Refill your prescription or talk to your healthcare provider before your SYMTUZA™ is all gone. o If you stop taking SYMTUZA™, your healthcare provider will need to check your health often and do blood tests regularly for several months to check your HBV infection or give you a medicine to treat your HBV infection. Tell your healthcare provider about any new or unusual symptoms you may have after you stop taking SYMTUZA™.

• Change in liver enzymes. People with a history of hepatitis B or C virus infection or who have certain liver enzyme changes may have an increased risk of developing new or worsening liver problems during treatment with SYMTUZA™. Liver problems can also happen during treatment with SYMTUZA™ in people without a history of liver disease.

Your healthcare provider may need to do tests to check your liver enzymes before and during treatment with SYMTUZA™.

• Severe liver problems. In rare cases, severe liver problems can happen that can lead to death. Tell your healthcare provider right away if you get these symptoms: o Skin or the white part of your o Nausea eyes turn yellow o Vomiting o Dark “tea-colored” urine o Stomach area pain o Light-colored stools o Loss of appetite for several days or longer SYMTUZA™ may cause severe or life-threatening skin reactions or rashes which may sometime require treatment in a hospital. Call your healthcare provider right away if you develop a rash. Stop taking SYMTUZA™ and call your healthcare provider right away if you develop any skin changes with symptoms below: • Fever • Blisters or skin lesions • Tiredness • Mouth sores or ulcers • Muscle or joint pain • Red or inflamed eyes, like “pink eye” (conjunctivitis) Who should not take SYMTUZA™?

• Do not take SYMTUZA™ with any of the following medicines: alfuzosin, carbamazepine, cisapride, colchicine (if you have liver or kidney problems), dronedarone, elbasvir and grazoprevir, ergot-containing medicines (such as: dihydroergotamine, ergotamine tartrate, methylergonovine), lovastatin or a product that contains lovastatin, lurasidone, oral midazolam (when taken by mouth), phenobarbital, phenytoin, pimozide, ranolazine, rifampin, St. John’s wort (Hypericum perforatum) or a product that contains St. John’s wort, sildenafil when used for pulmonary arterial hypertension (PAH), simvastatin or a product that contains simvastatin, or triazolam.

• Serious problems can happen if you take any of these medicines with SYMTUZA™.

Before taking SYMTUZA™, tell your healthcare provider about all of your medical conditions, including if you: • have liver problems (including hepatitis B or hepatitis C), have kidney problems, are allergic to sulfa (sulfonamide), have diabetes, have hemophilia, or have any other medical condition.

• are pregnant (if you become pregnant while taking SYMTUZA™), or plan to become pregnant. It is unknown if SYMTUZA™ will harm your unborn baby. o SYMTUZA™ should not be used during pregnancy.

• are breastfeeding or plan to breastfeed. Do not breastfeed if you take SYMTUZA™.

Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. Some medicines interact with SYMTUZA™. Keep a list of your medicines to show your healthcare provider and pharmacist.

Do not start taking a new medicine without telling your healthcare provider.

HOW SHOULD I TAKE SYMTUZA™?

• Take SYMTUZA™ 1 time a day with food.

WHAT ARE THE POSSIBLE SIDE EFFECTS OF SYMTUZA™?

SYMTUZA™ may cause serious side effects including: • See “What is the most important information I should know about SYMTUZA™?”

• Immune system changes can happen in people who start HIV medications.

• New or worse kidney problems, including kidney failure. o Your healthcare provider should do blood and urine tests to check your kidneys before you start and while you are taking SYMTUZA™.

• Too much lactic acid in your blood (lactic acidosis). o Too much lactic acid 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.

• Diabetes and high blood sugar (hyperglycemia). Some people who take protease inhibitors including SYMTUZA™ can get high blood sugar, develop diabetes, or your diabetes can get worse. Tell your healthcare provider if you notice an increase in thirst or if you start urinating more often while taking SYMTUZA™.

• Changes in body fat can happen in people taking HIV-1 medications.

• Increased bleeding can occur in people with hemophilia who are taking SYMTUZA™.

The most common side effects of SYMTUZA™ are: Diarrhea, rash, nausea, fatigue, headache, stomach problems, and gas.

These are not all of the possible side effects of SYMTUZA™.

Call your doctor for medical advice about side effects. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit http://www.fda.gov/medwatch or call 1-800-FDA-1088. You may also report side effects to Janssen Products, LP at 1-800-JANSSEN (1-800-526-7736).

Please see full Product Information, including Boxed Warning for SYMTUZA™. © Janssen Therapeutics, Division of Janssen Products, LP 2018 07/18 cp-51498v1

cp-62077v1

WHAT IS SYMTUZA™?

DON’T RISK RESISTANCE. TAKE THE KNOW YOUR RISK QUIZ—visit SYMTUZA.com/Quiz

PZA500916A.pdf 10.22.2018 10:00

ESA

NEW HIV TREATMENT

STAY YOU

BE RESILIENT

Your resilience matters. So does your HIV treatment.

It’s important to take your HIV medication every day, because missing even a few doses may lead to drug resistance and may cause it to stop working.

SYMTUZA™ is a treatment with a high barrier to drug resistance to help you keep fighting HIV with just one pill a day.

Ask your doctor about

Please see the accompanying Important Safety Information and Brief Summary, including Boxed Warning for SYMTUZA™ on following page.

PZA500916B.pdf 10.22.2018 10:00

ESA

What is SYMTUZA™ Used For?

SYMTUZA™ is a prescription medicine that is used without other antiretroviral medicines to treat Human Immunodeficiency Virus-1 (HIV-1) infection in adults who: • have not received anti-HIV-1 medicines in the past, or • when their healthcare provider determines that they meet certain requirements.

HIV-1 is the virus that causes AIDS (Acquired Immune Deficiency Syndrome).

It is not known if SYMTUZA™ is safe and effective in children under 18 years of age.

What is the most important information I should know about SYMTUZA™?

SYMTUZA™ can cause serious side effects including: • Worsening of hepatitis B virus infection. Your healthcare provider will test you for HBV before starting treatment with SYMTUZA™.

If you have hepatitis B virus (HBV) infection and take SYMTUZA™, your HBV may get worse (flare-up) if you stop taking SYMTUZA™. ° Do not stop taking SYMTUZA™ without first talking to your healthcare provider . Refill your prescription or talk to your healthcare provider before your SYMTUZA™ is all gone. ° Do not run out of SYMTUZA™ ° If you stop taking SYMTUZA™, your healthcare provider will need to check your health often and do blood tests regularly for several months to check your HBV infection or give you a medicine to treat your HBV infection. Tell your healthcare provider about any new or unusual symptoms you may have after you stop taking SYMTUZA™.

• Change in liver enzymes. People with a history of hepatitis B or C virus infection or who have certain liver enzyme changes may have an increased risk of developing new or worsening liver problems during treatment with SYMTUZA™. Liver problems can also happen during treatment with SYMTUZA™ in people without a history of liver disease. Your healthcare provider may need to do tests to check your liver enzymes before and during treatment with SYMTUZA™ .

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

SYMTUZA™ may cause severe or life-threatening skin reactions or rashes. Sometimes these skin reactions and skin rashes can become severe and require treatment in a hospital. Call your healthcare provider right away if you develop a rash. Stop taking SYMTUZA™ and call your healthcare provider right away if you develop any skin changes with symptoms below: • Fever • Blisters or skin lesions • Tiredness • Mouth sores or ulcers • Muscle or joint pain • Red or inflamed eyes, like “pink eye” (conjunctivitis) Who should not take SYMTUZA™?

• Do not take SYMTUZA™ with any of the following medicines: alfuzosin, carbamazepine, cisapride, colchicine (if you have liver or kidney problems), dronedarone, elbasvir and grazoprevir, ergot-containing medicines (such as: dihydroergotamine, ergotamine tartrate, methylergonovine), lovastatin or a product that contains lovastatin, lurasidone, oral midazolam (when taken by mouth), phenobarbital, phenytoin, pimozide, ranolazine, rifampin, St. John’s wort (Hypericum perforatum) or a product that contains St. John’s wort, sildenafil when used for pulmonary arterial hypertension (PAH), simvastatin or a product that contains simvastatin, or triazolam.

• Serious problems can happen if you take any of these medicines with SYMTUZA™ .

Before taking SYMTUZA™ , tell your healthcare provider about all of your medical conditions, including if you: • have liver problems (including hepatitis B or hepatitis C) • have kidney problems • are allergic to sulfa (sulfonamide) • have diabetes • have hemophilia • are pregnant, or plan to become pregnant. ° It is not known if SYMTUZA™ will harm your unborn baby. ° SYMTUZA™ should not be used during pregnancy because you may not have enough SYMTUZA™ in your body during pregnancy. ° Tell your healthcare provider if you become pregnant while taking SYMTUZA™. Your healthcare provider will prescribe different medicines if you become pregnant while taking SYMTUZA™. ° Pregnancy Registry: There is a pregnancy registry for those who take antiretroviral medicines during pregnancy. The purpose of the registry is to collect information about the health of you and your baby. Talk to your healthcare provider about how you can take part in this registry.

• are breastfeeding or plan to breastfeed. Do not breastfeed if you take SYMTUZA™. ° You should not breastfeed if you have HIV-1 because of the risk of passing HIV to your baby.

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° One of the medicines in SYMTUZA™ called emtricitabine can pass into your breast milk. It is not known if the other medicines in SYMTUZA™ can pass into your breast milk. ° Talk to your healthcare provider about the best way to feed your baby.

Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. Some medicines interact with SYMTUZA™. Keep a list of your medicines to show your healthcare provider and pharmacist.

• You can ask your healthcare provider or pharmacist for a list of medicines that interact with SYMTUZA™.

• Do not start taking a new medicine without telling your healthcare provider. Your healthcare provider can tell you if it is safe to take SYMTUZA™ with other medicines.

How should I take SYMTUZA™?

• Take SYMTUZA™ exactly as your healthcare provider tells you.

• Do not change your dose or stop taking SYMTUZA™ without talking to your healthcare provider.

• Take SYMTUZA™ 1 time a day with food.

• If you have difficulty swallowing, the tablet may be split using a tablet cutter. After splitting the tablet, the entire dose (both halves) should then be taken right away.

• Do not miss a dose of SYMTUZA™.

• When your SYMTUZA™ supply starts to run low, get more from your healthcare provider or pharmacy. This is very important because the amount of virus in your blood may increase if the medicine is stopped for even a short time. The virus may develop resistance to SYMTUZA™ and become harder to treat.

• If you take too much SYMTUZA™ , call your healthcare provider or go to the nearest hospital emergency room right away.

What are the possible side effects of SYMTUZA™?

SYMTUZA™ may cause serious side effects including: • See “What is the most important information I should know about SYMTUZA™?”

• Changes in your immune system (Immune Reconstitution Syndrome) can happen when you start taking HIV-1 medicines. Your immune system may 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 starting your HIV-1 medicine.

• New or worse kidney problems, including kidney failure. Your healthcare provider should do blood and urine tests to check your kidneys before you start and while you are taking SYMTUZA™. Your healthcare provider may tell you to stop taking SYMTUZA™ if you develop new or worse kidney problems.

• Too much lactic acid in your blood (lactic acidosis). Too much lactic acid 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.

• Diabetes and high blood sugar (hyperglycemia). Some people who take protease inhibitors including SYMTUZA™ can get high blood sugar, develop diabetes, or your diabetes can get worse. Tell your healthcare provider if you notice an increase in thirst or if you start urinating more often while taking SYMTUZA™.

• Changes in body fat can happen in people taking HIV-1 medications. The changes may include an increased amount of fat in the upper back and neck (“buffalo hump”), breast, and around the middle of your body (trunk). Loss of fat from the legs, arms, and face may also happen. The exact cause and long-term health effects of these conditions are not known.

• Increased bleeding for hemophiliacs. Some people with hemophilia have increased bleeding with protease inhibitors.

The most common side effects of SYMTUZA™ include: ° diarrhea ° rash ° nausea ° fatigue

° headache ° stomach problems ° gas

These are not all of the possible side effects of SYMTUZA™.

Call your doctor for medical advice about side effects. You may report side effects to the FDA at 1-800-FDA-1088.

What important facts I should know?

• This information is not complete. How to get more information: ° Talk to your healthcare provider or pharmacist ° Visit www.SYMTUZA.com to read over the FDA-approved product labeling and patient information ° Call to report side effects either to the FDA at 1-800-FDA-1088 or to Janssen Products, LP at 1-800-JANSSEN (1-800-526-7736) © Janssen Therapeutics, Division of Janssen Products, LP 2018 07/18 cp-63271v2

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POZ PLANET

BY TRENT STRAUBE

UNIQUE VOICES DUETS Jerome Caja: Nayland Blake & Justin Vivian Bond in Conversation and Kia LaBeija & Julie Tolentino in Conversation The concept behind the Duets series of books by Visual AIDS is simple: Get two established artists together and record them as they either discuss their own work and how HIV impacted them or they talk about the influence of a lesserknown artist now lost to AIDS; then print the conversations, along with images of the art. The results are fun and breezy yet very insightful. The two newest installments are no exception.

Jerome Caja wasn’t famous when he died of AIDS-related illness in 1995 at age 37. But this gender-bending multitalented

12 POZ DECEMBER 2018 poz.com

“skag-drag” performer and artist continues to influence new generations. Artist Nayland Blake and transgender singer Justin Vivian Bond, both friends of Caja’s, recall her outrageous life-as-art as well as the San Francisco art and club scene of the 1980s and 1990s. Caja, who had a master’s in fine art with a specialty in ceramics, used nail polish, lipstick and eyeliner to create her minuscule masterpieces, which were painted on tip trays, bottle caps, shells and found objects. In self-portraits, Caja often portrayed herself as Venus, and her work explored (and disrupted) notions of gender, HIV, sex and religion. Blake and Bond are superb guides to Caja’s world—a time and space ravaged by AIDS and now, thankfully, being properly archived.

Kia LaBeija and Julie Tolentino are both dancers and artists

(JEROME CAJA) COURTESY OF VISUAL AIDS/MARC GELLER; (ELEVEN) COURTESY OF VISUAL AIDS/KIA LABEIJA; (REUSABLE PARTS/ENDLESS LOVE) COURTESY OF VISUAL AIDS/DANIEL CARROLL; (ST. JEROME IN HER CELL) COURTESY OF VISUAL AIDS

Artists, doctors, sex workers, historians—all have something valuable to say about HIV in our latest roundup of books.

MEMOIR Solomon Agbor was raised in Cameroon, Africa, where he lost a beloved cousin to AIDS before earning a doctorate in public health in the United States. He then tackled the disease throughout Africa and the Caribbean for PEPFAR. Agbor’s fascinating memoir, The Epidemic of Our Time, is rich in cultural insight and respect for the people he serves.

When Tom Weise immigrated to the states from Germany in the ’90s, he knew he was HIV positive, which meant he couldn’t become a legal resident. As Weise recounts in his brutally honest Living Off the Edge, he turned to sex work and launched Rentboy.com, “the first internet portal for male prostitutes.” He also devoted himself to helping children with HIV and undocumented asylum seekers. Before long, his Rentboy world collided with his charitable work. He also dealt with crystal meth, lipodystrophy, hepatitis C but also gay marriage, love, world travel and reinvention.

(EPIDEMIC OF OUR TIME) DOG EAR PUBLISHING; (LIVING OFF THE EDGE) WYATT-MACKENZIE PUBLISHING; (COMFORT MEASURES ONLY) DUKE UNIVERSITY PRESS; (HAS THE GAY MOVEMENT FAILED?) UNIVERSITY OF CALIFORNIA PRESS

POETRY Illness acts as a muse and a source of human narrative for physicianpoet Rafael Campo, who treats HIV-positive patients at Harvard, where he also teaches. In his latest offering, titled Comfort Measures Only, the “gay man of Cuban origin” graces us with poems from his previous collections (including Diva and What the Body Told) plus 30 new works.

Clockwise from far left: Jerome Caja in her art studio in 1994; Kia LaBeija’s self-portrait Eleven, 2015, archival inkjet print, part of the series 24; LaBeija and Julie Tolentino in Reusable Parts/Endless Love in 2016; Caja’s St. Jerome in Her Cell, 1993, enamel, acrylic and ink on paper and fabric

whose work is deeply informed by HIV, race and gender.

When LaBeija was born with HIV in 1990, Tolentino was already immersed in the AIDS activism and art scene of New York City—she was featured in art collective Gran Fury’s 1989 campaign for ACT UP titled “Kissing Doesn’t Kill,” which pictured smooching couples of varying races and sexual orientations. She founded Clit Club in 1990 and appears in Madonna’s Sex book. Meanwhile, LaBeija became active in the house and ball scene and reigns as Overall Mother of the House of LaBeija. She’s a voguer, photographer and activist. Both women use their bodies in their art, and both are equally adept at using words to convey their messages through this fascinating dialogue.

NONFICTION In his survey of 50 years of LGBT history, which includes a few detours into HIV/AIDS, Martin Duberman poses the provocative question Has The Gay Movement Failed? In the quest to attain rights to marriage and military service, has the movement become too conservative, overlooking the intersection of social justice issues like racism and prison reform? Similarly, although gay groups rallied to fight AIDS during the early epidemic, now that effective treatment exists, where do broader issues such as health care access and sexual health fit into the LGBT movement?

poz.com DECEMBER 2018 POZ 13

Jesus

Positive since 1986

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HIV

DRUG-RESISTANT

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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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.

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POZ PLANET

BY TRENT STRAUBE

AN ORAL HISTORY OF AIDS AND ART Listen to (or read) 40 in-depth interviews with artists who created during the early epidemic.

What was it like in the New York art world at the height of the AIDS epidemic? Why not listen to Ross Bleckner, Nan Goldin or Kenny Scharf tell you all about it? They’re a smattering of the 40 art luminaries interviewed (each for nearly five hours!) about HIV and their lives as part of a project of the Archives of American Art. What’s more, most of this incredible resource is posted online as audio files and transcripts.

Titled “Visual Arts and the AIDS Epidemic: An Oral History Project,” this collection of eyewitness accounts was funded with a grant from the Keith Haring Foundation. (The Archives of American Art documents and preserves the history of art in the United States; it’s a part of the Smithsonian Institute.)

“While there have been many documentaries, films, exhibitions and books chronicling the AIDS epidemic, none has focused on in-depth, firsthand accounts of key figures in the

visual arts—telling the larger story in their own words,” says Liza Kirwin, deputy director of the Archives of American Art. “They are still grieving but also celebrating survival and celebrating the memories of so many artists who died. In the 1980s, many artists mobilized for political action and that became their all-consuming purpose, while others responded in more private ways. Their friends, their partners were dying, and their community was dying, and they had no choice but to make themselves heard.”

We’re still listening to them today.

THE GOOD KIND OF VIRAL

(HEADPHONES) ISTOCK

When your HIV social media post reaches the masses These tweets and “19-year-old Kylie Jenner is worth an Instagram post $900 million and on pace to become spurred a global the youngest self-made billionaire conversation. ever. What are you doing with your life?” asked a cheeky New York Daily News tweet a few months back. When POZ blogger Shawn Decker came across it, he responded: “I was diagnosed with HIV at age 11 in 1987. My parents were told I had 6 months to 2 years to live. I’m turning 43 on Monday, and I’ve spent the last two decades of my life educating about HIV through writing, speaking and laughter.” He didn’t think much more about the post—until he noticed he’d gotten 260,807 likes

and nearly 63,000 retweets, not to mention countless DMs. “I know I’m just a blip on the radar,” he tells POZ, “but the hope as an educator is that some little seed I plant has a positive change in someone’s world.”

Such accidental AIDS activism isn’t uncommon. There’s Tucker Shaw, an editor at America’s Test Kitchen, who posted a series of 22 tweets that told one heartbreaking story about losing friends and surviving the epidemic—so much grief and poetry condensed into so few characters. Then there’s the Broadway performer who took to Instagram to disclose his status. “I, Hernando Umana, am a proud gay man LIVING with HIV,” he wrote under his picture. “F—ck that feels good to say.”

poz.com DECEMBER 2018 POZ 17

VOICES

BLOGS AND OPINIONS FROM POZ.COM

I’VE SAID IT

I

t’s the clarion call of many a budding activist: “HIV does not define me.” It’s an admirable sentiment too. It speaks of empowerment, of mastering challenge, of defiance, of retaining a clear sense of identity and of priorities.

At the same time, I can’t help but think that, manageable condition or not, HIV does define me and many others. It shapes our lives.

Pre-diagnosis years, I suspect, are universally much different from postdiagnosis years. That’s even more so for long-term survivors, who now constitute a large faction within the HIV community and who inevitably bear scars from living through the worst years of the epidemic. And as a result of criminalization, we can be charged with serious offenses our HIV-negative neighbors cannot. We grapple with stigma too—in all its forms—that our neighbors cannot even comprehend.

Living with HIV is different.

The result? I’m willing to admit that while the “HIV does not define me” sentiment is admirable, HIV has so changed my psyche in myriad ways

18 POZ DECEMBER 2018 poz.com

that it does in fact define me. My biography inevitably starts with “Bob Leahy is a person living with HIV since 1993.”

Clearly, I see myself first as a person living with HIV, even though symptoms are under control. I see myself as a person living with HIV who has spent a large chunk of my life writing and arguing and advocating around HIV. I see myself as a person living with HIV whose life changed very dramatically the day I was diagnosed. Almost overnight, I went from banker to activist.

HIV has shaped my life ever since.

That kind of change isn’t always a bad thing. (Anything beats banking!)

I’m not here, though, to debate whether an HIV diagnosis is a good thing or a bad thing—it can be both. That it is a life-changing thing seems hard to dispute. The change can often manifest in big ways. How we see ourselves—as strong and powerful or as damaged goods—is an example.

So in my own case, I would like to think I’m not defined by HIV but in many ways I am. I can’t help it. Until recently, for example, my work days were consumed with reporting on HIV,

my colleagues were people dealing with HIV themselves, my wonderful social media circle is full of people living with HIV, sharing thoughts and news about HIV and sometimes wearing HIV-themed T-shirts. I can’t be alone in thinking that for a large chunk of my life—a quarter century in fact—I have been consumed by HIV. If that’s not a life defined by HIV, I don’t know what is.

True, I live a life where family and friends outside the HIV world play a huge part. My dog is everything to me, and so is my longtime partner. But then researchers see me as part of a serodiscordant, or mixed-status, couple, never once as a dog lover. Our outside lives are seldom acknowledged within our own community. Instead, we are required, or choose, to put on an HIV hat again and again and again.

I don’t resent that. In many ways, I like being a person living with HIV. It has given my life meaning and purpose, even if in an all-consuming way. I don’t feel the need to downplay that. Rather, I celebrate that having HIV has shaped my life, shaped my identity and—yes— defined who I am. ■

ISTOCK

In a blog post titled “HIV Does Define Me: There, I’ve Said It,” POZ blogger and long-term survivor Bob Leahy reflects on the ways that the virus shapes our lives, whether we like it or not. Below is an edited excerpt.

Geoff Edholm (left) and David Schacter in Buddies

LONG FORGOTTEN In a blog post titled “A Should-Be-Classic Film About AIDS Is Now on DVD,” POZ copy chief Joe Mejía recaps the contributions of Buddies, the first feature film about AIDS. Here is an edited excerpt.

COURTESY OF VINEGAR SYNDROME/ROE BRESSAN/FRAMELINE DISTRIBUTION

W

hat was the first feature film about AIDS? Chances are, you guessed Philadelphia (1993), starring Tom Hanks and Denzel Washington. Wrong.

Or maybe you guessed An Early Frost, starring Aidan Quinn (1985). Close— but wrong again. That’s because Frost was a made-for-TV movie that premiered months after the correct answer: Buddies (September 1985).

The rediscovered and digitally restored Buddies, written, directed and edited by Arthur J. Bressan Jr., who died of AIDS-related illness in 1987, is now claiming its rightful place in history.

It’s all thanks to the efforts of film historian Jenni Olson, who worked with Bressan’s sister, Roe Bressan, to secure the film rights, and cult-film distributor Vinegar Syndrome, which has issued a Buddies DVD/Blu-ray combo pack of the film. (Frameline Distribution hopes to make the movie available for streaming next year.)

Filmed in nine days in New York and Washington, DC, on a shoestring budget (even by 1980s standards) of $27,000, Buddies is a moving, intimate portrait

of two very different gay men and their evolving relationship during the peak days of the AIDS epidemic.

In the film, reserved and apolitical 25-year-old David Bennett (David Schachter), a volunteer for “the Gay Center,” is assigned to be a “buddy” to 32-year-old Robert Willow (Geoff Edholm), a fellow gay man who, abandoned by friends and family, is dying of AIDS-related complications alone in a quarantined room in St. Matthews Hospital in New York City.

Robert, an outspoken activist and onetime bon vivant, is asleep in his hospital bed, sick with pneumonia and Kaposi sarcoma, when David, clad in a hospital gown and a surgical mask (per hospital protocol), enters his room for the first time.

Initially, the two men clash, with David early on confessing in his journal: “I’ve never met a person like Robert Willow—he unnerves me.” But over several months and many bedside visits, the men open up to each other and develop a mutual respect and love that surprises—and changes— them both. David becomes “woke,” in

today’s parlance, while, aided by David’s acceptance and affection, Robert achieves emotional catharsis in the face of his mortality.

David and Robert’s far-ranging, earnest conversations offer a primer on the early days of AIDS, spanning such topics as gay visibility, AIDS stigma and the willful lack of government funding for research and treatment.

On the one hand, the film is a work of fiction inspired by real life’s Buddy Program (launched in 1982 at Gay Men’s Health Crisis, GMHC), New York’s St. Vincent’s Hospital, and the countless gay men like Robert and David who died of and survived AIDS; on the other hand, it mirrors our present-day reality, where the criminalization of HIV, inequitable access to health care, and diminishing research funds serve as obstacles in the fight against HIV. Much has changed since 1985, but the need for buddies persists, as evidenced by the relaunch of GMHC’s Buddy Program, which now, thanks to effective HIV medications, primarily pairs buddies with people living with— not dying from—the virus. ■

poz.com DECEMBER 2018 POZ 19

SPOTLIGHT

BY JOE MEJÍA

#USCA2018 The 22nd annual United States Conference on AIDS (USCA 2018), organized by NMAC (the National Minority AIDS Council), took place in Orlando from September 6 through 9. In what was billed as an homage to ACT UP, the conference’s focus was activism and its theme was “Fight Back, Fight HIV.” The opening plenary, titled “Activism and the Intersection of Movements Fighting for Social Justice,” featured high-profile activists Abigail Echo-Hawk, director of the Urban Indian Health Institute in Seattle; Alicia Garza, cofounder of #BlackLivesMatter; David Hogg, a survivor of the Marjory Stoneman Douglas (MSD) High School shooting in Parkland, Florida, and founding member of anti–gun violence group Never Again MSD; and Richard L. Zaldivar, executive director of the Latino LGBTQ group The Wall Las Memorias Project in Los Angeles. Legendary ACT UP founder Larry Kramer appeared via a special video.

Attendees used social media not only to praise the event and share their insights but also to shame Vice President Mike Pence (who happened to be in town stumping for Governor Rick Scott) for his mishandling of an HIV outbreak in Indiana when he was governor of that state, proving that activism can take many forms and, thanks to modern technology, need never take a break.

Posts may be edited for clarity and/or space.

20 POZ DECEMBER 2018 poz.com

Phill Wilson

poz.com DECEMBER 2018 POZ 21

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.

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B

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

KEEP SHINING.

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

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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. BVYC0047 06/18

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EVERYDAY

BY JENNIFER MORTON

December 10 1 The first WORLD AIDS DAY is observed.

It marks the first-ever global health day.

(1988)

Visual AIDS launches DAY WITH(OUT) ART. The annual event was established to make the public aware that AIDS affects everyone. (1989)

4

ACT UP/LOS ANGELES meets for the first time in West Hollywood. (1987)

The Centers for Disease Control and Prevention reports THE FIRST CASE OF AIDS INVOLVING AN INFANT who received blood transfusions. (1982)

18

The CDC EXPANDS THE DEFINITION OF AIDS to include those living with HIV with a CD4 count below 200. (1992)

22 12

GRETHE RASK, a Danish physician and surgeon, dies of AIDS-related causes. (1977)

13

The first national CONFERENCE ON WOMEN AND HIV INFECTION is held in Washington, DC. (1990)

7

ANGELS IN AMERICA premieres on HBO. Directed by Mike Nichols, the miniseries is based on the Pulitzer Prize–winning play by Tony Kushner. (2003)

(HOLLYWOOD, HANDS AND FEET AND CAPITOL BUILDING) ISTOCK

17

RYAN WHITE is diagnosed with AIDS. (1984)

PHILADELPHIA opens in limited release in the United States.

Tom Hanks goes on to win the Academy Award for best actor.

(1993)

23

The Food and Drug Administration approves an ORAL HIV TEST, the first non–blood-based antibody test for HIV. (1994)

30

16

Singer SYLVESTER dies of AIDS-related complications. (1988)

Time magazine names HIV/AIDS researcher DAVID HO, MD, its “Man of the Year” for his work on highly active antiretroviral therapy.

(1996)

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 DECEMBER 2018 POZ 25

RESEARCH NOTES

PREVENTION

TREATMENT

CURE

CONCERNS

Condom Update

Long-Acting Injectable

Posttreatment Control

Poorer Mental Health

The Centers for Disease Control and Prevention has revised its 2015 estimate of the factor by which condoms reduce the risk of transmitting HIV through anal sex, upping the figure from 70 percent to just over 90 percent. To reach this new estimate, researchers conducted a meta-analysis of four studies that included HIV-negative men who have sex with men. Among the men who reported never or sometimes using condoms, for each additional HIVpositive partner with whom they had receptive anal intercourse, their risk of contracting HIV increased by 83 percent. For the men who reported always using condoms, their risk per additional such partner rose by just 7 percent. Comparing the difference between these two rates, the study authors concluded that when an HIV-negative man has receptive intercourse with an HIV-positive man, condoms reduce his chance of contracting the virus by 91 percent.

Monthly injectable treatment for HIV may soon become a reality thanks to promising findings from an ongoing Phase III trial of a long-acting injectable formulation of the antiretrovirals (ARVs) cabotegravir and Edurant (rilpivirine) given every four weeks. The study includes 618 adults who had fully suppressed HIV for at least six months upon entering the trial, at which point they were taking a daily oral regimen that included two nucleoside/ nucleotide reverse transcriptase inhibitors (NRTIs) plus an additional oral ARV. The participants were randomized either to stay on their current regimen or to switch to the long-acting injectable treatment.

Because a similarly low proportion of each study group had a detectable viral load 48 weeks into the trial, the long-acting injectable treatment is considered noninferior to, or as effective as, daily oral regimens. The injectable regimen also posted good safety marks.

People treated for HIV soon after contracting the virus are more likely to be able to control viral replication for an extended period after interrupting antiretroviral (ARV) therapy. Researchers analyzed data from 14 studies and found 67 people who achieved so-called posttreatment control of HIV—defined as interrupting ARV treatment and then experiencing a viral load of 400 or below according to two thirds of the viral load tests taken during a period spanning at least 24 weeks.

Of those who started ARV treatment soon after contracting HIV, 13 percent achieved posttreatment control, compared with just 4 percent of those who started ARVs later on.

Among those who achieved posttreatment control, the proportion who maintained viral control at the end of each of their first five years after interrupting their ARVs was a respective 75 percent, 55 percent, 41 percent, 30 percent and 22 percent.

People living with HIV have higher rates of depression and anxiety compared with their peers who do not have the virus. Drawing from two British studies, researchers assembled a cohort of 3,250 HIV-positive adults and a matched control group of HIV-negative individuals.

Twenty-seven percent of those with HIV had depressive symptoms, compared with 11 percent of those without the virus. A respective 22 percent and 10 percent of those with and without HIV had anxiety symptoms, and a respective 35 percent and 16 percent had overall depression, defined as current treatment for depression or a history of a depressive disorder. After adjusting the data to account for various factors, the researchers found that having HIV, compared with not having the virus, was associated with a respective 3.3-fold, 2.7-fold and 2.6-fold greater risk of having depressive symptoms, anxiety symptoms and overall depression.

26 POZ DECEMBER 2018 poz.com

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

BY BENJAMIN RYAN

In adults with HIV on ART who have diarrhea not caused by an infection

IMPORTANT PATIENT INFORMATION This is only a summary. See complete Prescribing Information at Mytesi.com or by calling 1-844-722-8256. This does not take the place of talking with your doctor about your medical condition or treatment.

What Is Mytesi?

Mytesi is a prescription medicine used to improve symptoms of noninfectious diarrhea (diarrhea not caused by a bacterial, viral, or parasitic infection) in adults living with HIV/AIDS on ART. Do Not Take Mytesi if you have diarrhea caused by an infection. Before you start Mytesi, your doctor and you should make sure your diarrhea is not caused by an infection (such as bacteria, virus, or parasite).

Possible Side Effects of Mytesi Include:

Tired of planning your life around diarrhea?

Enough is Enough Get relief. Pure and simple. Ask your doctor about Mytesi.

Mytesi (crofelemer): • Is the only medicine FDA-approved to relieve diarrhea in people with HIV • Treats diarrhea differently by normalizing the flow of water in the GI tract • Has the same or fewer side effects as placebo in clinical studies • Comes from a tree sustainably harvested in the Amazon Rainforest What is Mytesi?

Mytesi is a prescription medicine that helps relieve symptoms of diarrhea not caused by an infection (noninfectious) in adults living with HIV/AIDS on antiretroviral therapy (ART).

Important Safety Information Mytesi is not approved to treat infectious diarrhea (diarrhea caused by bacteria, a virus, or a parasite). Before starting you on Mytesi, your healthcare provider will first be sure that you do not have infectious diarrhea. Otherwise, there is a risk you would not receive the right medicine and your infection could get worse. In clinical studies, the most common side effects that occurred more often than with placebo were upper respiratory tract (sinus, nose, and throat) infection (5.7%), bronchitis (3.9%), cough (3.5%), flatulence (3.1%), and increased bilirubin (3.1%).

For Copay Savings Card and Patient Assistance, see Mytesi.com

Please see complete Prescribing Information at Mytesi.com.

NP-390-20

RELIEF, PURE AND SIMPLE

• Upper respiratory tract infection (sinus, nose, and throat infection) • Bronchitis (swelling in the tubes that carry air to and from your lungs) • Cough • Flatulence (gas) • Increased bilirubin (a waste product when red blood cells break down) For a full list of side effects, please talk to your doctor.

Tell your doctor if you have any side effect that bothers you or does not go away.

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.

Should I Take Mytesi If I Am: Pregnant or Planning to Become Pregnant?

• Studies in animals show that Mytesi could harm an unborn baby or affect the ability to become pregnant • There are no studies in pregnant women taking Mytesi • This drug should only be used during pregnancy if clearly needed A Nursing Mother?

• It is not known whether Mytesi is passed through human breast milk • If you are nursing, you should tell your doctor before starting Mytesi • Your doctor will help you to decide whether to stop nursing or to stop taking Mytesi Under 18 or Over 65 Years of Age? • Mytesi has not been studied in children under 18 years of age • Mytesi studies did not include many people over the age of 65. So it is not clear if this age group will respond differently. Talk to your doctor to find out if Mytesi is right for you

What Should I Know About Taking Mytesi With Other Medicines?

If you are taking any prescription or over-the-counter medicine, herbal supplements, or vitamins, tell your doctor before starting Mytesi.

What If I Have More Questions About Mytesi?

For more information, please see the full Prescribing Information at Mytesi.com or speak to your doctor or pharmacist.

To report side effects or make a product complaint or for additional information, call 1-844-722-8256.

Rx Only Manufactured by Patheon, Inc. for Napo Pharmaceuticals, Inc. San Francisco, CA 94105 Copyright © Napo Pharmaceuticals, Inc. Mytesi comes from the Croton lechleri tree harvested in South America.

PZA501228.pdf 10.25.2018 09:14

ESA

CARE AND TREATMENT

BY BENJAMIN RYAN

Do ARVs Boost Blood Pressure?

VIRAL SUPPRESSION DISPARITIES Among people diagnosed with HIV in the United States, there are wide disparities in viral suppression rates based on jurisdiction, race and transmission category, according to information reported to the Centers for Disease Control and Prevention (CDC) through 2016 from the 37 states (plus Washington, DC), that provided sufficient data.

In 2014, 58 percent of HIV-positive people who knew their serostatus and an estimated 47 percent of all people living with HIV were virally suppressed.

A total of 65 percent of whites with diagnosed HIV were virally suppressed, compared with 58 percent of Latinos and 52 percent of Blacks. Similar disparities were seen in most jurisdictions.

For the most part, older individuals were more likely to be virally suppressed than younger ones, although this gap was narrower in the Northeast.

Breaking down their analysis by gender and transmission category, the CDC researchers found that men who reported having likely contracted the virus through sex with men had the highest viral suppression rate, at 61 percent. Males who likely contracted HIV through injection drug use had the lowest rate, at 48 percent.

Among those who received an HIV diagnosis in 2014, 68 percent were virally suppressed within 12 months of their diagnosis, a rate ranging between 92 percent in Montana and 60 percent in the District of Columbia.

The average time between diagnosis and viral suppression was 6.9 months nationally, ranging from 4.5 months in Montana to 7.8 months in Mississippi and the District of Columbia.

“It is important for people with newly diagnosed HIV to be promptly linked to care so they can quickly attain viral suppression to reduce their window of infectiousness and improve their health outcomes,” says the paper’s author, Kristen L. Hess, PhD, an epidemiologist with the CDC’s Division of HIV/AIDS Prevention.

28 POZ DECEMBER 2018 poz.com

Many of the antiretrovirals (ARVs) commonly used today apparently don’t lead to high blood pressure.

Researchers analyzed data on more than 33,000 people who were in medical care for HIV in Western nations between 1999 and 2013.

During a cumulative 223,000 years of follow-up, about 7,650 members of the study (23 percent) developed high blood pressure, for a rate of 3.4 diagnoses per 100 cumulative years of follow-up.

After adjusting the data to account for various risk factors for high blood pressure, the researchers found that each five years of exposure to Norvir-boosted Crixivan and Viramune was associated with a 12 percent and 8 percent increase in the risk of high blood pressure, respectively. No other ARVs analyzed were linked to the condition.

The most prominent risk factors for high blood pressure included being male, older or Black; using injection drugs while having a low CD4 count; and having diabetes, high blood lipids, obesity or impaired kidney function.

“Due to limited follow-up,” says the study’s coordinator, Camilla Ingrid Hatleberg, MD, PhD, of the Department of Infectious Diseases at the Rigshospitalet at the University of Copenhagen in Denmark, “we have not been able to study any drugs from the newer classes, such as integrase inhibitors and entry inhibitors and hence cannot exclude the possibility that these drugs may play a contributing role in the development of [high blood pressure].”

People with HIV, Hatleberg says, should seek to lower their risk of cardiovascular disease “by stopping smoking, following a healthy diet, exercising regularly and ensuring that their blood pressure, lipids and blood sugar levels are checked regularly.”

TREATING HEAVY DRINKING HIV-positive heavy drinkers seeking to cut back on alcohol can benefit from monthly injections of extended-release naltrexone just as people without the virus can.

Researchers conducted a study with 51 people with HIV who drank heavily and who adhered to their antiretrovirals at a rate below 95 percent.

Among those who received at least five injections of naltrexone or the placebo, 23 were still in the study after 24 weeks and included in the analysis.

All participants also received counseling.

Naltrexone did not affect the participants’ adherence to their HIV treatment, the proportion with an undetectable viral load, their CD4 count or their VACS Index score, an estimate of the risk of death for people with HIV. The treatment was, however, associated with fewer heavy drinking days among the participants.

“Currently, even when indicated, many patients do not receive medications that may help them cut down on their alcohol use,” says Jennifer Edelman, MD, the first author of the study and an associate professor at the Yale School of Medicine. “We hope our findings result in more patients receiving injectable naltrexone.”

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

Hep C and Substance Abuse on the Brain Hepatitis C virus (HCV) coinfection and dependency on alcohol or other substances may exacerbate people with HIV’s already elevated risk of premature brain aging.

Researchers measured brain volumes according to 1,100 MRI scans collected over a 14-year period from 549 people between 25 and 75 years old. This group included 68 people with HIV who did not have alcohol dependence, 60 people with HIV with alcohol dependence, 222 people without HIV who had alcohol dependence and 199 control subjects who had neither HIV nor alcohol dependence.

Compared with those who did not have the virus, those with HIV experienced steeper declines in the volume of the prefrontal cortex in particular. Those with the virus also showed deficits in their temporal, parietal, insular and cingulate brain regions. Alcohol and drug dependence as well as HCV coinfection were associated with exacerbated HIV-related brain volume deficits. Nevertheless, people with HIV who had neither substance dependence nor HCV saw accelerated age-related declines in the volume of the frontal and posterior parietal regions of the brain compared with the control subjects.

“Steps to take by people living with HIV and HCV for maintaining good health into aging include eating well, exercising regularly and engaging socially while reducing alcohol and drug use, keeping up with antiretroviral treatment, and getting treatment for hepatitis C infection,” says the study’s lead author, Edith V. Sullivan, PhD, a professor of psychiatry and behavioral sciences at Stanford University.

poz.com DECEMBER 2018 POZ 29

THE POZ

100 CELEBRATING PEOPLE 50 AND OVER

T

50+

PHOTOGRAPHY BY JENSEN LARSON

HE NINTH ANNUAL POZ 100 HONORS PEOPLE LIVING WITH HIV WHO are 50 and over and making a difference in the fight against the virus.

This age group represents the future of the epidemic—both in the sheer number of people living with HIV and in the inspiring ways they’re thriving.

About 50 percent of people living with HIV in the United States are 50 and older, and by 2030, that number is expected to jump to 70 percent, according to the International Society for Infectious Diseases.

Many people on the list are long-term survivors, diagnosed before the advent of effective HIV treatment in 1996. Many of these folks didn’t expect to live to see 50, let alone 60 or, in the case of six honorees, 70 or beyond (the oldest person on this year’s POZ 100 is 78).

On the flip side, a lot of folks on the list contracted HIV or first learned of their positive status in their 50s. This isn’t unusual. In fact, one in six new diagnoses are in people 50 and older. (As one HIV prevention campaign reminds us: “Age Is Not a Condom.”) You’ll even meet one man who was diagnosed with AIDS on his actual 50th birthday.

Needless to say, the POZ 100 is not a definitive list. It is a representation based on your nominations. You’ll find a stunning variety of individuals—not only in terms of race, gender, geography and the like but also in the type of HIV work they do, whether it’s educating, counseling, researching vaccines or answering phones. But the POZ 100 honorees do share some traits: resilience, energy and passion. We’re certain they’ll inspire readers of all ages!

PHOTOGRAPHY BY JONATHAN

POZ 10 0

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HE

HE

POZ 10

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0

50+ Waldon Adams Age 57 Washington, DC

Waldon lives to run. He also lives to help others get a roof over their heads.

Once homeless himself, Waldon is now a fierce advocate of the housingfirst model of ending homelessness, and he credits the permanent supportive housing he received at Friendship Place (along with his love of running) with helping him achieve nine years (and counting) of sobriety. He is an advocacy fellow with Miriam’s Kitchen and a member of both The Way Home campaign’s steering committee and the coordinated entry team at Pathways to Housing DC. In 2010, he received the Whitman-Walker AIDS Walk Courage Award. Waldon hosts a running group for fellow HIV-positive day-program peers and last year completed his 20th marathon. For Waldon, the most important thing is to keep putting one foot in front of the other.

Stephen Addona Age 65 Orlando, FL

Stephen is a long-term survivor who currently serves as a certified recovery peer specialist and health educator for Hope and Help of Central Florida. In 2014, he founded RE-START, the area’s largest HIV/AIDS support group, after noticing a serious gap in support services for people living with HIV in Orlando. Even better? The program has expanded online with a RE-START Men’s Group that boasts more than 350 members worldwide. In addition, the group encourages members of its community to prioritize their health, combat isolation and dismantle stigma in order to live longer, stronger and healthier lives with HIV.

Moisés Agosto-Rosario Age 53 Oxon Hill, MD

In May 1997, Moisés appeared on the cover of POZ (and was labeled “the diva of treatment activism”). He hasn’t left the AIDS spotlight since. After

34 POZ DECEMBER 2018 poz.com

testing HIV positive in 1986 while in his native Puerto Rico, he was prompted to move to the United States for health care. Alarmed by the lack of treatment education and research geared to people of color, he complained about the issue to the National Minority AIDS Council (NMAC). Impressed, in 1993 the organization created a position for him to address the problem. Today, he’s NMAC’s director of treatment. An editor, author, poet and activist involved in several HIV groups, Moisés continues working to help HIV communities here and abroad, in English and in Spanish.

advisory council but also pitches in wherever else help is needed—from food pantries to fundraisers. Lillian’s main focus is advocating for HIVpositive heterosexual women and fighting stigma among the Latinx community. She spearheads an event known as Mother’s Day of Pampering (serving 50 to 100 mothers and daughters) and assists with holiday festivities (serving nearly 400 clients).

It’s no surprise that the Alliance’s newly renovated center for HIV testing, care management and connection to treatment is called the Luis & Lillian Outreach Center.

Tez Anderson

Stephen Aube

Age 59 San Francisco, CA

Age 58 Key West, FL

Tez shines a light on the needs of long-term survivors and the issues around aging with HIV. In 2013, he founded the group Let’s Kick ASS– AIDS Survivor Syndrome (ASS) in San Francisco; the group now boasts local chapters across the nation. He coined the term “ASS” to describe the aftermath of long-term survivorship.

Tez is the force behind HIV LongTerm Survivors Awareness Day, which is observed each year on June 5. (It was on that date in 1981 that the Centers for Disease Control and Prevention [CDC] first reported about what is now known as AIDS.) As an adviser at ACRIA, Tez has also helped research HIV in older adults and has penned papers and declarations for older people living with the virus.

A long-term survivor, Stephen is the chairman of the consumer advisory committee of A.H. of Monroe County (formerly AIDS Help), which specializes in testing, linkage to care and housing for people living with HIV. In this role, he was instrumental in rewriting the committee’s bylaws to welcome the participation of all A.H. clients, rendering it a more inclusive and representative collective. He also helped launch the initiative “Food Matters,” which teaches clients how to prepare nutritious, cost-effective meals.

Through the Patient Care and Prevention Planning Group, he works with the state of Florida to improve the delivery of services to clients. But it was when Hurricane Irma made landfall in Key West in September 2017 that Stephen outdid himself. Rather than evacuate, he stayed put as a point of contact for clients during the storm and in the aftermath served as a liaison between clients and local emergency services, providing meals and emotional support along the way.

Lillian Anglada Age 60 New York, NY

Lillian was diagnosed with HIV in 1989 and lost her husband to AIDS soon afterward. That’s when she decided to get educated about the virus.

When she turned to Alliance for Positive Change (formerly known as AIDS Service Center NYC) for help, she also ended up finding her calling and a full-time career. Today, she is the president of the Alliance’s consumer

Proscovia Ayoo Age 57 Tororo, Uganda

Diagnosed in 1998, Proscovia is chair of the Tororo Persons Living with HIV/AIDS Network, which she

cofounded in 2005. She does peer counseling, conducts home visits, runs community awareness campaigns and participates in rallies. She represented Uganda at the International Community of Women Living with HIV Eastern Africa from 2013 to 2017. Proscovia was also a member of the International Rectal Microbicides Advocates and started the network Teachers Living with HIV in Uganda.

A widow, mother and grandmother, she spends time educating young people about HIV prevention. She has formed several rural communitybased groups of people living with HIV throughout Tororo. Currently, she is focusing on HIV prevention and treatment among sex workers.

Arizona (now Northland Cares) and served on its board of directors for the fi rst few years. Robbie was also responsible for starting Getting to the Heart of HIV/AIDS, a weekend retreat that ran for 23 years, and an HIVpositive support group that lasted 20 years. He is a devoted educator who currently teaches HIV sessions at Northern Arizona University and the ASIS School of Massage. In addition, Robbie volunteers as a massage therapist at the HIV retreat Strength for the Journey and is involved in scientific research on HIV elite controllers, a group of people who maintain an undetectable viral load without treatment.

and women living with HIV. Although the former nurse is now a familiar face at HIV/AIDS conferences, on social media (as a blogger for The Well Project) and in HIV groups (too many to mention), she didn’t immediately jump into activism after her diagnosis in 2002. At the time, she was living in a shelter for abused women; several years later, after leaving another violent lover, she lived out of her car. Depressed, Wanda stopped taking HIV meds and became very ill. When the local AIDS Care Service offered help, she found a new calling in advocacy and hasn’t stopped since. These days, she likes to say she’s “HIV positive living healthily with AIDS.”

Randy Boyd Karla Barnett Age 52 Newark, NJ

Karla, also known as “Auntie” to the young LGBTQ+ guests of the African American Office of Gay Concerns (AAOGC), isn’t just the program’s director and coordinator of projects such as World AIDS Day events— she’s also an activist. She has participated in AIDSWatch, an annual advocacy event in Washington, DC, and coordinates AAOGC’s AIDSWALK team, known as the A-Team Newark. And those who work with her say she’s “a wonderful human being to boot.” HIV positive since 1996, Karla worked with Ellen Bey and Special Audiences before joining the team at AAOGC. There, she’s made strides implementing the office’s Thank Goodness I’m Fabulous! Peer Advocacy Project, among other efforts—and she’s willing to share her story of survivorship with anyone who may need to hear it.

Age 56 Long Beach, CA

Inspired by Magic Johnson, Randy revealed his HIV status in his first published essay, “Just Like Magic,” in 1991.

Since then, he has continued to use writing as a platform to share his story of living with HIV. Randy’s work has appeared in POZ, Frontiers Magazine, A&U magazine and The Washington Blade as well as two anthologies. His four published novels, all of which have been Lambda Literary Award fi nalists, feature main characters who are Black, gay and living with HIV, echoing his personal life. Randy also uses his two blogs, Randy Boyd’s Blocks and Funky Black Poz Jock, to discuss HIV and sex in the age of AIDS. His fi fth and upcoming novel is a medical mystery and sci-fi thriller involving a group of people living with HIV.

Wanda BrendleMoss Robbie Bergman Age 63 Flagstaff, AZ

Since his diagnosis in 1987, Robbie has worked to improve the lives of those living with HIV and to increase public awareness of the virus. He helped to found AIDS Outreach of Northern

Age 64 Winston-Salem, NC

As a “seasoned woman”—she hates the word old— Wanda takes special interest in issues related to aging

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50+ Chris Bridges Age 62 Los Angeles, CA

Like so many long-term survivors, Chris became an activist in the early 1980s, at the time of his own diagnosis.

He spent years advocating for access to treatment and spending considerable time in psychotherapy to address the trauma. In his late 40s, Chris went back to school to become a therapist himself and now works for the Los Angeles County Department of Mental Health serving people diagnosed with, affected by or at risk for HIV. Chris’s own experiences as an AIDS survivor prove absolutely integral to his job, allowing him to work with unparalleled wisdom and experience through issues like trauma, linkage and adherence to care, HIV prevention, disclosure, aging with HIV, family challenges, body image, loss and grief, and career formation.

low-income New Yorkers affected by HIV/AIDS, mass incarceration and the war on drugs. They were a campaign leader in the group’s “30% Rent Cap” campaign, successfully advocating for increased access to affordable housing for people living with the virus. Reginald is now helping to enact New York state’s plan to end AIDS by 2020 and leading efforts on a citywide affordable housing campaign and a national campaign to decriminalize HIV. The social justice warrior has a master’s degree in education and is active in the Unity Fellowship of Christ Church Movement, which was founded 36 years ago to serve gay/queer/gendernon-conforming Black people dying of AIDS-related causes when their families and churches turned their backs on them. A member of People’s Action Institute National Training Team, a national network of grassroots community advocates, Reginald also volunteers weekly at a local public television station.

William Brochinsky Age 62 Weaverville, NC

William, a nursing educator for Kaplan Test Prep, was named Kaplan’s May 2018 feature employee partly because he has committed to dismantling myths around HIV and long-term survival (he believes he contracted HIV in 1984). William is also an adjunct professor at Mars Hill University, where many students are impressed by his ability to articulate his journey with HIV through the decades. He is an actor, writer and director and is currently working on a show titled Walking the Line. His goal is to promote HIV education so that future generations may understand the struggle endured by those diagnosed during the early years of the epidemic.

Reginald T. Brown Age 66 Brooklyn, NY

Reginald (who prefers the pronoun “they”) serves on the board of directors for VOCAL-NY, a grassroots organization that builds power among

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Marilyn Burnett Age 75 Laurel, MD

Diagnosed in 1991, Marilyn soon realized that “you’re only as sick as the secrets you keep” and began speaking out about living with HIV. A graduate of Morgan State University, she overcame drug addiction and subsequently became a mentor to other women aiming to do the same. In 2004, she cofounded Older Women Embracing Life (OWEL), a nonprofit committed to supporting older women, primarily of color, living with HIV/AIDS. The group has hosted many social and educational events in Washington, DC, and Baltimore.

Marilyn has been cited in many articles and news segments as well as the book Sex After…Women Share How Intimacy Changes as Life Changes.

Although in recent years her health conditions have led her to cut back on her work, she stays in touch with the women of OWEL and maintains her fabulous fashion sense!

Giulio Maria Carbelli Age 52 Rome, Italy

Since testing positive in 1997, Giulio has been a staunch HIV advocate in his native Italy. Currently, he is an active member of the European AIDS Treatment Group in both the Policy Working Group and the European Community Advisory Board. He is also a member of the executive committee of the treatment as prevention PARTNER study and serves on the

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community advisory committee for the clinical trials network INSIGHT, which focuses on HIV treatment. Giulio is also an experienced journalist who has written for numerous Italian publications, including Delta, Pride and Gay.it. Grazie, Giulio, for all your hard work!

Brian Carmichael Age 55 Elmira, NY

When Brian was incarcerated in California in the late ’80s and early ’90s, he became a powerful advocate for people living with HIV even though he had not yet been diagnosed with the virus. After witnessing fi rsthand the stigma and discrimination that HIV-positive prisoners faced, he wanted to help ensure that they could live and die with dignity. In 1992, he and others orchestrated a medication strike—and later a hunger strike— at the California Medical Facility in Vacaville. Their tireless efforts led to the establishment of the fi rst-ever federally funded hospice in any U.S. prison. Fast-forward to 2018. Brian is a peer educator for the “Know the Risks” program at the Elmira Correctional Facility in upstate New York and has educated thousands of incarcerated individuals on the basics of HIV, hepatitis C and other sexually transmitted infections (STIs). He is also a prolific painter who has dedicated his beautiful artwork to the many friends he has lost to AIDS complications over the years. He’s hoping to be paroled in February 2019.

Marco Castro-Bojorquez Age 50 Loyalton, CA

Marco, who left Mexico more than 20 years ago, has dedicated his work to amplifying the voices of immigrants, people living with HIV/AIDS and the LGBTQ community. He founded HIVenas Abiertas: A Network of Latinx Immigrant People Living with HIV, was a lead organizer with the coalition of Californians for HIV

Criminalization Reform and served on the steering committee of the United States People Living with HIV (PLWH) Caucus. Marco is also a fi lmmaker whose 2015 documentary, El Canto del Colibri, explored the relationships between Latino immigrant fathers and their LGBTQ family members. This powerful work helped him win President Obama’s prestigious Champions of Change award. Yes, you can!

Joel Caudle Age 55 Nashville, TN

Joel knows fi rsthand the importance of finding support soon after a positive diagnosis. He fi rst connected with Nashville CARES as a client in 2003 after learning he had HIV. He now works as a medical case manager associate for My House, an offsite health and wellness center operated by Nashville CARES in conjunction with the organizations Neighborhood Health and Street Works. As a member of the My House team, Joel offers tailored information and services to samegender-loving men of color, including STI testing, pre-exposure prophylaxis (PrEP), treatment adherence skills and status disclosure support. Of his work, Joel says, “I use every day that I come to work as an opportunity to empower people with the will to live.”

Orbit Clanton Age 56 New York City, NY

Orbit is the epitome of a long-term survivor, having been diagnosed with HIV when it was initially called gayrelated immune deficiency back in 1982. Thankfully, he has persisted for nearly 36 years and cofounded the Perceptions for People with Disabilities, a New York City–based organization that serves individuals living with HIV and/or disabilities. A devout Christian, Orbit is the leader of the Healing Hope AIDS Ministry at the Convent Avenue Baptist Church. He’s also an official United Nations non-

governmental organization HIV faithbased delegate. In 2018, he and his church were awarded the Choose Life Award from the National Black Leadership Commission on AIDS. Praise!

Neil Coffman-Grey Age 53 Santa Barbara, CA

“Neil the Wandmaker” has combined his passion for art with his LGBTQ and HIV/AIDS advocacy for nearly 30 years. His most recent venture is Bringing the Boys Home, a showcase at the Museum of Ventura County of four panels from the NAMES Project AIDS Memorial Quilt that were sewn by members of NAMES Project Ventura County in the 1990s. With his husband, Keith Coffman-Grey, Neil is also involved in the Gold Coast Archives, a collection of local LGBTI and HIV/ AIDS historical documents and artifacts. Neil serves as public policy coordinator for the HIV Coalition of Ventura County, is active in local politics and writes fantasy novels. His boundless magical energy is an inspiration to his friends and fellow activists alike.

Robert Cornelius Age 56 Chattanooga, TN

Formerly a prevention team member, Robert is now the financial coordinator at Cempa Community Care, which provides primary and infectious disease care, mental health counseling, health maintenance, peer navigation and more for people living with and affected by HIV. When not crunching numbers for the organization, he spends his time spreading awareness about the virus. Known for his sassy personality and huge heart, Robert is currently working on programs for long-term survivors who are 50 and older, including planning for retirement—a milestone many in his community thought they might never reach. Over the past 20 years, his advocacy work has impacted the lives of people living with HIV from all walks of life and of all ages.

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50+ Shelia Crockett Age 55 Dallas, TX

After living with HIV for almost 30 years, Shelia disclosed her status to loved ones a year ago. But she’s been advocating on behalf of people living with HIV for the last three years. A natural leader with a knack for organizing, Shelia is currently cochair of the Dallas–Fort Worth regional chapter of the Positive Women’s Network– USA (PWN-USA), which organizes at the state level to further the group’s mission and advocacy agenda. She is also on the planning committee for the Grace Project National Conference for Women Living with HIV/AIDS, an annual event in Texas designed to support, educate and empower women with the virus. Last year, Shelia was arrested in Washington, DC, for protesting the repeal of the Affordable Care Act. This year, she was arrested for protesting Supreme Court nominee Brett Kavanaugh.

William Scott Daly Age 67 Schenectady, NY

Diagnosed with HIV in 1985, William is a member of the Capital District committee for New York State’s End the Epidemic campaign and an HIV peer educator for the Ellis Family Health Center. He has a long history as an HIV advocate. From 1994 to 2009, he was a member of the Northeastern New York Ryan White HIV Care Network, serving as cochair of both the steering and the community awareness committees. He has served on the community advisory board of the AIDS Treatment Center at Albany Medical Center since 1994. He has participated in AIDSWatch since 1998 and has also contributed to POZ.

Mark A. Davis Age 62 Philadelphia, PA

As a gay man living with HIV and

38 POZ DECEMBER 2018 poz.com

struggling with mental illness and addiction, Mark wanted to help others living with such issues. To that end, in 2003, Mark, who has survived a suicide attempt as well as prostate cancer, founded Pink & Blues, a peerrun support group and safe space for LGBTQI people living with mental illness, substance use disorders and other health conditions, including HIV. In 1987, Mark was elected the founding president of the Pennsylvania Mental Health Consumers’ Association. Two years later, he was diagnosed HIV positive. In 2009, Mark was awarded a Consumer Leadership Voice Award by the Substance Abuse and Mental Health Service Administration for his work in the mental health field, including advocating for survivors of suicide attempts. Mark’s goal is to help eliminate the needless deaths by suicide and overdose that disproportionately affect LGBTQI people of all generations.

Larry Day Age 61 Boston, MA

Larry is program director at the Victory Program’s Boston Living Center, a nonprofit community and resource center that fosters the wellness of HIVpositive people through education, treatment information and supportive services. He first became involved with the organization as a member after years of struggling with addiction and incarceration and then started doing peer education in Boston’s public schools. Soon after, Larry found his calling in public advocacy, accepting a position at AIDS Action to work on policy. He has since spoken out in the office of every Massachusetts legislator, testified in front of Congress, attended AIDSWatch for more than 20 years and spoken at numerous state and national events on Rob Quinn and Lillibeth Gonzalez

behalf of people struggling with addiction and HIV/AIDS.

also founded the Georgia Association for Positive People, and Pozpreneurs, which assists people living with HIV in business endeavors.

Yolanda Diaz Age 56 Bronx, NY

Yolanda has been fighting against HIV/AIDS and advocating for women living with the virus for over 25 years. She is a cofounding member of PWN-USA and currently serves as the secretary-treasurer for the group’s New York City chapter. For eight years, she worked with SMART University, helping self-identified women access HIV treatment, prevention, nutrition and health education services. Her work with high-risk groups across the city’s five boroughs has earned her numerous honors over the years, including the 2020 Leading Women’s Society Award from SisterLove in 2010. She was recently elected to the U.S. PLHIV Caucus, where she sits on the steering committee. She currently works at Iris House, where she’s described by colleagues as knowledgeable, honest and supportive. Yolanda fi nds sisterhood with women across every creed, color, borough and religion.

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Jace Dyckman Age 55 Billings, MT

Diagnosed with HIV in 1993, Jace overcame a 20-year meth addiction to go on to earn his bachelor’s degree in human services at Montana State University in 2009 and become the secretary for Yellowstone AIDS Project.

Since 2014, he has been a case manager in the HIV Services Program at RiverStone Health. He is also cochair of Montana’s HIV Planning Group and treasurer for Not in Our Town Billings, which fights for an inclusive community free of hate and intolerance. He is a member of Prime Timers, a social network for older gay men.

Currently working on his master’s in public health, Jace also volunteers with AIDSpirit USA, a local support organization that also aids an orphanage in Uganda. Described by colleagues as having a heart of gold and going out of his way for his clients, Jace fights stigma by living as an openly HIV-positive gay man in rural Montana. His passions are food and HIV prevention.

Age 64 Atlanta, GA

Diagnosed in 1985, Reggie has dedicated his time to helping others living with HIV/AIDS for more than 40 years. A Vietnam veteran and member of Thrive SS, an organization of Black gay and bi men living with HIV who are striving for an undetectable viral load, Reggie also serves as the Atlanta Ryan White Planning Council’s second vice chair, on the Emory Community Advisory Treatment Clinical Trials Unit, as a community advisory board member of the Atlanta Legal Aid Society and as the chairman of the board of GACYE, an organization that empowers youth. And he’s the founder and CEO of POZ Military and Veterans USA– International. But that’s not all—he

Bryan Fleury Age 52 West Springfield, MA

Dressed as Rudy the Rapping Rubbertree, Bryan fi lmed a public service announcement about condoms that won a nationwide contest for prevention messaging in 2010. These days, “Rudy” frequently attends AIDS walks, where he’s a popular selfie attraction. For the past 17 years, Bryan has been taking his HIV prevention talk to high schools across Massachusetts and Connecticut. What’s really unique is that after the students hear his personal story and prevention messages, he encourages them to write poetry on the subject (so far, he has received more than 900 poems)!

As someone who has lived with HIV for 27 years, Bryan inspires adults too.

In 2006, he and his girlfriend, Millie Malave, who is also HIV positive, graced the cover of POZ and shared their uplifting story about fi nding love. They met in 2003 at a Valentine’s Day party at Positive Connections (a group for heterosexuals with HIV).

This year, they celebrated 16 years together. How sweet!

Anselmo Fonseca Age 56 San Juan, Puerto Rico

Anselmo is the president and cofounder of the AIDS advocacy group Pacientes de SIDA pro Política Sana (AIDS Patients for Sane Policies), which he and his late partner formed in 1999 after learning about the embezzlement of more than $2 million in funds from the San Juan AIDS Institute by government officials. To this day, frustration with government unaccountability and neglect continues to fuel his efforts to help people living with HIV—especially in the aftermath of Hurricane Maria. After being stranded in the mountains for three days after the storm, Anselmo, a founding board member of the National Latino AIDS Action Network and cochair of the Ryan White Part B Planning Body, jumped into action to help fellow islanders living with HIV access disaster assistance to rebuild their homes and secure medications and food in the face of indifference from the government on the mainland.

Larry Frampton Age 57 Nashville, TN

Shortly after Larry Frampton was diagnosed with HIV in 1989, his partner died of an AIDS-related illness. Fearful of contracting the virus, his partner’s family refused to take his belongings, and Larry had to promise that nothing would be said about his partner’s sexuality or status. That’s when he knew he needed to dedicate his life to fighting the

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What is TRUVADA for PrEP?

Who should not take TRUVADA for PrEP?

TRUVADA for PrEP (pre-exposure prophylaxis) is a prescription medicine that can help reduce the risk of getting HIV-1 through sex, when taken every day and used together with safer sex practices.

This use is only for people who weigh at least 77 pounds and are HIV-negative and at risk of getting HIV-1.

Do not take TRUVADA for PrEP if you:  Already have HIV-1 infection or if you do not know your HIV-1 status.

If you are HIV-1 positive, you need to take other medicines with TRUVADA to treat HIV-1. TRUVADA by itself is not a complete treatment for HIV-1.

If you have HIV-1 and take only TRUVADA, your HIV-1 may become harder to treat over time.

To help determine your risk of getting HIV-1, talk openly with your healthcare provider about your sexual health.

What are the other possible side effects of TRUVADA for PrEP?

IMPORTANT SAFETY INFORMATION What is the most important information I should know about TRUVADA for PrEP? Before and while taking TRUVADA for PrEP:  You must be HIV-negative before you start and while taking TRUVADA for PrEP. Do not take TRUVADA to reduce the risk of getting HIV-1 unless you are confirmed to be HIV-negative.  Get tested for HIV-1 immediately before and at least every 3 months while taking TRUVADA.  If you think you were exposed to HIV-1, tell your healthcare provider right away.  Many HIV-1 tests can miss HIV-1 infection in a person who has recently become infected. If you have flu-like symptoms, you could have recently become infected with HIV-1. Tell your healthcare provider if you had a flu-like illness within the last month before starting or at any time while taking TRUVADA.  Symptoms of new HIV-1 infection include tiredness, fever, joint or muscle aches, headache, sore throat, vomiting, diarrhea, rash, night sweats, and/or enlarged lymph nodes in the neck or groin.  You must continue to use safer sex practices. Just taking TRUVADA for PrEP may not keep you from getting HIV-1.  Do not miss any doses of TRUVADA. Missing doses may increase your risk of getting HIV-1 infection.  To further help reduce your risk of getting HIV-1:  Know your HIV status and the HIV status of your partners. If your partner is living with HIV, your risk of getting HIV is lower if your partner consistently takes HIV treatment every day.  Get tested for other sexually transmitted infections. Other infections make it easier for HIV to infect you.  Practice safer sex by using latex or polyurethane condoms to lower the chance of sexual contact with body fluids.  Talk to your healthcare provider about all the ways to help reduce HIV risk.  If you do become HIV-1 positive, you need more medicine than TRUVADA alone to treat HIV-1. TRUVADA by itself is not a complete treatment for HIV-1. If you have HIV-1 and take only TRUVADA, your HIV-1 may become harder to treat now and in the future.

TRUVADA can cause serious side effects:  Worsening of hepatitis B (HBV) infection. Your healthcare provider will test you for HBV. If you have HBV and stop taking TRUVADA, your HBV may suddenly get worse. Do not stop taking TRUVADA without first talking to your healthcare provider, as they will need to monitor your health.

Serious side effects of TRUVADA may also include:  Kidney problems, including kidney failure. Your healthcare provider should do blood and urine tests to check your kidneys before and during treatment with TRUVADA. If you develop kidney problems, your healthcare provider may tell you to stop taking TRUVADA.  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.  Bone problems, including bone pain, softening, or thinning, which may lead to fractures. Your healthcare provider may do tests to check your bones.

Common side effects in people taking TRUVADA for PrEP are headache, stomach-area (abdomen) pain, and decreased weight. Tell your healthcare provider if you have any side effects that bother you or do not go away.

What should I tell my healthcare provider before taking TRUVADA for PrEP?  All your health problems. Be sure to tell your healthcare provider if you have or have had any kidney, bone, or liver problems, including hepatitis.  If you are pregnant or plan to become pregnant. It is not known if TRUVADA can harm your unborn baby. If you become pregnant while taking TRUVADA for PrEP, tell your healthcare provider.  If you are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed if you think you may have recently become infected with HIV. HIV can be passed to the baby in breast milk. Talk to your healthcare provider about the risks and benefits of breastfeeding while taking TRUVADA for PrEP.  All the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. TRUVADA may interact with other medicines. Keep a list of all your medicines and show it to your healthcare provider and pharmacist when you get a new medicine.  If you take certain other medicines with TRUVADA, your healthcare provider may need to check you more often or change your dose. These medicines include certain medicines to treat hepatitis B or C infection.

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.

Want to find out more about the pill? Talk to your healthcare provider and visit truvada.com.

Please see Important Facts about TRUVADA for PrEP including important warnings on the following page.

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We're on the pill.

It’s not birth control, it’s TRUVADA for PrEP®—a once-daily prescription medicine that can help reduce the risk of getting HIV-1 through sex, when taken every day and used together with safer sex practices.  TRUVADA for PrEP is only for people who are at risk of getting HIV-1 and weigh at least 77 pounds.  You must be HIV-negative before you start and while taking TRUVADA for PrEP.  TRUVADA for PrEP does not prevent other sexually transmitted infections or pregnancy.

Ask your doctor about your risk of getting HIV-1 and if TRUVADA for PrEP may be right for you.

Find out more about the pill at truvada.com Actor portrayals

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Before starting and while taking TRUVADA for PrEP: • You must be HIV-1 negative. You must get tested to make sure that you do not already have HIV-1. Do not take TRUVADA for PrEP to reduce the risk of getting HIV-1 unless you are confirmed to be HIV-1 negative. Get tested for HIV-1 immediately before and at least every 3 months while taking TRUVADA. • Many HIV-1 tests can miss HIV-1 infection in a person who has recently become infected. Symptoms of new HIV-1 infection include tiredness, fever, joint or muscle aches, headache, sore throat, vomiting, diarrhea, rash, night sweats, and/or enlarged lymph nodes in the neck or groin. Tell your healthcare provider if you have had a flu-like illness within the last month before starting or while taking TRUVADA. • You must continue to use safer sex practices. Just taking TRUVADA for PrEP may not keep you from getting HIV-1.

• If you do become HIV-1 positive, you need more medicine than TRUVADA alone to treat HIV-1. If you have HIV-1 and take only TRUVADA, your HIV-1 may become harder to treat now and in the future.

TRUVADA may cause serious side effects, including: • Worsening of hepatitis B (HBV) infection. Your healthcare provider will test you for HBV. If you have HBV, your HBV may suddenly get worse if you stop taking TRUVADA. Do not stop taking TRUVADA without first talking to your healthcare provider, as they will need to check your health regularly for several months.

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

• 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.

• Bone problems.

Common side effects in people taking TRUVADA for PrEP include headache, stomach-area (abdomen) pain, and decreased weight.

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

• Take 1 tablet once a day, every day, not just when you think you have been exposed to HIV-1.

TRUVADA for PrEP is a prescription medicine that can help reduce the risk of getting HIV-1 through sex, when taken every day and used together with safer sex practices. This use is only for people who weigh at least 77 pounds and are HIV-negative and at risk of getting HIV-1.

• To help determine your risk of getting HIV-1, talk openly with your healthcare provider about your sexual health.

Do NOT take TRUVADA for PrEP if you: • Already have HIV-1 infection or if you do not know your HIV-1 status.

• Do not miss any doses. Missing doses may increase your risk of getting HIV-1 infection.

• Use TRUVADA for PrEP together with safer sex practices.

• Get tested for HIV-1 at least every 3 months. You must stay HIV-negative to keep taking TRUVADA for PrEP.

• Know your HIV status and the HIV status of your partners.

• Get tested for other sexually transmitted infections. Other infections make it easier for HIV to infect you.

Tell your healthcare provider if you: • Have or have had any kidney, bone, or liver problems, including hepatitis.

• Practice safer sex by using latex or polyurethane condoms.

• Talk to your healthcare provider about all the ways to help reduce HIV risk.

• Have any other medical conditions.

• Are pregnant or plan to become pregnant.

• Are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed if you think you may have recently become infected with HIV. HIV can pass to the baby in breast milk.

Tell your healthcare provider about all the medicines you take: • Keep a list that includes all prescription and over-the-counter medicines, 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 TRUVADA for PrEP.

• This is only a brief summary of important information about TRUVADA for PrEP. Talk to your healthcare provider or pharmacist to learn more, including how to prevent HIV infection.

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

TRUVADA, the TRUVADA Logo, TRUVADA FOR PREP, 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: May 2018 ©2018 Gilead Sciences, Inc. All rights reserved. TVDC0245 06/18

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stigma surrounding HIV/AIDS. To that end, he has worked in hospices, organized fundraisers and served on countless boards and councils, including a stint as cochair of the Nashville Regional HIV Planning Council. Currently, “Cowboy Larry” is the public policy director for Nashville CARES and sits on the Nashville End the Epidemic Coordinating Committee, where he helps to devise the blueprint to end the epidemic in Nashville and is working to incorporate customized care for long-term survivors into the plan.

Randall Furrow Age 60 Phoenix, AZ

Randall has been a member of Phoenix’s Ryan White Part A Planning Council since his diagnosis 15 years ago. He was chairman of the council for two terms and is currently the vice chairman. He serves on the Advisory Council of the Area Agency on Aging, Region One, which provides services for older adults, people living with HIV and those with disabilities.

Randall is also a member of the Arizona HIV Integrated Statewide Advisory Group, which is charged with developing and monitoring the state’s plan to effectively end the local HIV epidemic by 2021. He is committed to advocating for increased recognition of the needs of HIV long-term survivors and people over 50 living with HIV. Randall most recently attended the 2018 United States Conference on AIDS (USCA) as a returning HIV 50+ Strong and Healthy Scholar.

organization since 2006. Much of her work includes empowering and educating people living with HIV; hosting community forums on HIV and aging, safer sex and other important topics; and delivering support services to atrisk communities of color. She is dedicated to ending HIV stigma in the Latino community and to uplifting women to take control of their sexual health. She is also a strong proponent of PEP (post-exposure prophylaxis) and PrEP and the concept of “Undetectable = Untransmittable” (“U=U”).

As an NMAC HIV 50+ Strong and Healthy Scholar, Lillibeth recently gave a presentation on aging with HIV at USCA 2018. Her goal is to end the AIDS epidemic in New York by 2020.

Jesús Guillén Mark Grantham Age 57 Chattanooga, TN

When he moved to Chattanooga in 2014, Mark recognized the need for HIV advocacy in the Bible Belt. Amid racial, economic, educational and religious barriers, Mark saw a challenge to find his voice. From protesting, marching and getting arrested to lobbying at the state and federal level and mentoring those newly diagnosed with HIV, he sees his involvement as a way to pay things forward and to express gratitude to those who have gone before us. Mark has been involved with the Council for HIV/AIDS Care and Prevention, USCA, Positive Living Conference and HIV is Not a Crime. Among other things, he is currently working on modernizing HIVspecific laws and care for long-term survivors in Tennessee.

Lillibeth Gonzalez Age 64 New York, NY

When Lillibeth was diagnosed HIV positive in 1992, she did everything in her power to stay alive for her young son, including receiving help and training from GMHC, among many other organizations. A GMHC client for 25 years, Lillibeth has worked as a community health educator for the

1985, Aundaray learned he had HIV. Shock and stigma led to a suicide attempt and the eventual birth of an advocate. A playwright and actor (he has landed numerous commercials and TV roles), he moved to New York City in 2003, where he worked for Pride for Youth on Long Island. He’s now deputy director of Brooklyn’s GRIOT Circle—the acronym stands for “gay reunion in our time”—a group of LGBTQ elders of color. Although in the 1980s HIV derailed his college goals, in recent years, he returned to school and completed his master’s in public relations and corporate communications. Lucky for us, he’s putting those skills to good use!

Age 58 San Francisco, CA

As a person living with HIV for 33 years, Jesús is deeply committed to making life better for long-term survivors. He works to bring together senior organizations and HIV institutions to provide support and resources for those aging with the virus, and he raises awareness about the challenges facing this specific population.

Jesús is also the founder of the HIV Long Term Survivors group on Facebook, which includes a diverse community of almost 5,000 members. In 2016, he appeared in the HIV longterm survivors documentary Last Men Standing. He is currently the cochair of the HIV and Aging Workgroup and a member of the Long Term Care Coordinating Council in San Francisco. An immigrant from Mexico, Jesús advocates on behalf of immigrants of color living with HIV in the United States.

Aundaray Guess Age 51 New York, NY

For many POZ readers Aundaray is an old friend. Since 2011, he’s been blogging on POZ.com about his life, his beloved beagles and HIV issues related to people of color—notably Black gay men. Shortly after graduating from high school in Minnesota in

Carlos Gutierrez-Solana Age 71 New York, NY

Carlos holds many titles: artist, curator, arts administrator and museum professional. An artist since the 1960s, his work has primarily focused on subjects such as the male body, gender,

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50+ sexuality and AIDS. Among his AIDS artwork are Government Flat, Positively Undetectable, Good Health and Tolerate/Debate. While these works are mostly digital collages, Carlos also uses other techniques, including painting, sculpting and drawing, to make his art. He currently sits on the board of directors at Visual AIDS, the only contemporary arts organization committed fully to raising AIDS awareness and creating dialogue around HIV issues today. Diagnosed in 1989, he supports the organization’s efforts to support artists living with HIV and is wholeheartedly invested in bringing multicultural perspectives to the group.

Bill Hall Age 65 Seattle, WA

A member of the Tlingit tribe of Southeast Alaska, Bill has been living with HIV since 1986 and has survived both cancer and severe depression.

Today, he advocates for individuals battling these conditions. He serves on the community advisory board of defeatHIV, a research group run by the Fred Hutchinson Cancer Research Center, and is a community adviser for the Seattle Indian Health Board and the Urban Indian Health Institute. Bill has cited stigma as the biggest obstacle in fighting HIV in the Native community and has described knowing fellow Natives who, when they learned they were positive, were so ashamed and so afraid that their communities would find out that they avoided seeing doctors or taking medication. Having found hope through others who shared their HIV stories, he speaks out so that others may understand that they need not suffer alone or in silence.

Mitchell Handrich Age 54 New Orleans, LA

Diagnosed with HIV in 1985, Mitchell has devoted his life to caring for others living with the virus. After gradu-

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ating from nursing school in 1990, Mitchell chose to work in the HIV inpatient unit at Charity Hospital in New Orleans when few wanted to care for those living with HIV. He also served in the hospital’s outpatient program and, later, as the nurse manager of the inpatient unit—until Hurricane Katrina hit. But the devastation didn’t destroy Mitchell’s passion for care. He continued to work in other New Orleans facilities, including FEMA clinics, and even volunteered in Ethiopia. Now a nurse practitioner, Mitchell has returned to University Medical Center’s HIV Outpatient Program and has won the HIV Program Outstanding Nurse Award and a Great 100 Nurses Award, among others, for his commitment to patients and his advocacy. Mitchell works to break down stigma and to bond with those he treats through sharing his story and taking leadership roles in efforts to create a more positive health care experience for all people living with HIV.

Danny Harris Age 57 Little Rock, AK

Danny was previously honored in the 2016 POZ 100, which celebrated advocates in the South. Since then, he has continued his work as the statewide outreach and prevention coordinator at ARCare HIV Special Services Program, where he’s one of the first points of contact for newly diagnosed people. He hosts forums at schools, churches and health fairs to provide HIV prevention and testing and to combat stigma. He facilitates peer-topeer empowerment groups as part of the Positive Empowerment Project and produces a bimonthly empowerment newsletter. Danny serves on the Arkansas HIV Planning Group and is organizing the second annual Arkansas Empowerment Conference. When he’s not spending quality time with his wife, children and grandchildren, he’s likely on the road, driving to where he’s needed next.

Michelle Harris Graham Harriman Age 52 Long Island City, NY

Diagnosed with HIV in 1990, Graham has not only made advocacy for those living with HIV his life’s work—he has also made the needs of other long-term survivors a priority. Previously at the Cascade AIDS Project in Portland, Oregon, he’s now the director of the HIV/AIDS Care and Treatment Program with the Bureau of HIV/AIDS at the New York City Department of Health and Mental Hygiene—which is also the largest Ryan White Program Part A Program in the United States. In his role at the department, Graham has been a leading force in improving care and services for long-term survivors and people over age 50 living with HIV. In 2017, Graham was chosen to serve as chair of the Communities Advocating Emergency AIDS Relief Coalition, where he leads efforts to provide people living with HIV with proper resources and care.

Age 60 Fort Wayne, IN

Michelle had no idea what her journey would look like when she was diagnosed with HIV six years ago. She had been in a medically induced coma for almost five weeks and was suffering from depression. But one day, she decided she wanted to help people like her living with HIV. Her life changed in June 2017 when she attended her first HIV conference. She currently volunteers with the HIV Modernization Movement, a group of individuals seeking to update Indiana’s criminal HIV laws. Michelle is also the PWNUSA Indiana state lead, which makes her a key conduit to the HIV community in her state and the national office.

Deborah Helm Age 67 San Diego, CA

Deborah has raised money for AIDS services for the past 30 years. When she and her business partners saw how

AIDS-related illnesses were killing many gay waiters and other employees in the 1980s, they decided to take action by supporting organizations like Mama’s Kitchen, which delivers meals to those with AIDS and cancer. As coowner of The Mission restaurants, Deborah has proudly supported the San Diego LGBT Community Center’s annual Dining Out for Life fundraising event since it began in 2006. Her three establishments have regularly donated 25 percent of proceeds on one special day of dining for the center’s HIV programs. In 2008, her fundraising became personal when she was diagnosed with AIDS. To help fight stigma, she shared her story with The San Diego Union-Tribune last year.

Patrice Henry Age 66 Baltimore, MD

When Patrice was diagnosed with AIDS in 1995 and given three months to live, she was referred to the infectious disease clinic at Johns Hopkins Hospital. Today, the Johns Hopkins University School of Medicine, Division of Infectious Diseases, employs Patrice as an HIV community program coordinator and a peer health advocate for the Project LINK Adherence Program at one of its local clinics. Her job includes providing support to newly diagnosed patients and helping adolescents transition to adult care. Patrice also coordinates and co-facilitates education and positive self-management program groups. In addition, she is staff liaison for the clinic’s patient consumer advisory board. She is a former HIV community speaker for Gilead Sciences and even participated in its 2008 theater production Beyond the Diagnosis,, which included three plays about people living with HIV.

Ángel Luis Hernández Age 55 Arecibo, Puerto Rico

Since his own diagnosis in 2003, Ángel, a native Puerto Rican, has

dedicated his life to improving the lives of those on the island living with HIV. He believes the best way to achieve this is to have people with the virus help shape the policies that affect their health and to fi nd ways to improve the quality of the care they receive. To that end, Ángel serves as a member of AVAC (AIDS Vaccine Advocacy Coalition) and the AIDS Clinical Trials Group Community Scientific Subcommittee as the AIDS Malignancy Consortium Community Representative and on the University of Puerto Rico AIDS Clinical Trials Unit Community Advisory Board. He also serves on the Continuous Quality Improvement Committee of the Ryan White Part C Program and volunteers at AARP. To ensure that islanders living with the virus are included in the conversations taking place on the mainland, Ángel does his best to represent Puerto Rico at as many national and international conferences as he can.

Matthew Hodson Age 51 London, England

Matthew made it his mission to challenge HIV stigma and prevent new infections following his diagnosis 20 years ago. In 1999, he joined Gay Men Fighting AIDS (GMFA), where he worked on and developed campaigns on HIV prevention; he became CEO of GMFA in 2013. He is currently executive director of NAM, a charity that supports people living with HIV by providing up-to-date information on HIV/AIDS, chiefly through its website, aidsmap.com. For his use of Twitter in engaging around HIV issues, Matthew was named Social CEO of the Year in 2017. He believes that

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her state who is living with HIV has access to care and treatment, no matter how far they may live from support services.

Franceina Hopkins

Mark Hughes

Age 55 Lexington, SC

Age 56 Indianapolis, IN

Franceina uses her powerful voice to speak for those who might otherwise go unheard, in particular people in rural areas of her native South Carolina, where she’s known as the “Condom Drop Queen” for distributing thousands of condoms each month.

Her passion for fighting for the rights of people living with HIV is boundless.

In addition to working as a linkage-tocare specialist at Palmetto AIDS Life Support Services, she’s a member of P.O.S.I.T.I.V.E. Voices, PWN-USA, WISE Women and the Sero Project— just to name a few. Franceina has worked to ensure that everyone in

Since testing positive in 1995, Mark has worked to improve the lives of those living with HIV—and to prevent transmission. He’s the office manager and the coordinator for the 3MV prevention program at Brothers United (BU), where he discusses cultural and societal factors in HIV and STI transmission with a group of men ages 25 and older. To those in the community, “Uncle Mark” is on hand to help those most vulnerable to HIV, especially Black men and women. He mentors those newly diagnosed with

Pat Kelly and Bryan Jones

HIV, offering a friendly ear, a ride to treatment or even somewhere to sleep.

This year, Mark led BU’s Positive Organizing Project and helped to organize the fi rst Indiana HIV Advocacy Day at the statehouse. He also helped to form the HIV Modernization Movement Steering Committee.

Throughout his advocacy, Mark makes it a priority to include the experiences and perspectives of people of color living with HIV.

Olga Irwin Age 51 Youngstown, OH

Since 2001, Olga has been a member of the Ohio AIDS Coalition, where she has engaged in HIV outreach and presented at dozens of healing workshops and World AIDS Day events.

This outreach has led her to work at numerous other local and national advocacy organizations, including PWN-USA, AIDS Alliance, HIV is Not a Crime, the Ohio Ryan White Care Advisory Board, the AIDS Healthcare Foundation and many others. In 2009, Olga went back to school and became a licensed social worker to further strengthen her outreach and activism. Some of her latest work involves attending and organizing rallies and press conferences and visiting legislators in Washington, DC, on behalf of the HIV-positive community to help stop the repeal of the Affordable Care Act.

Edward Jackson Age 59 Birmingham, AL

A gay Black man who grew up in the rural South, Edward was diagnosed with HIV in 1988. He is now the community engagement programs manager at the University of Alabama at Birmingham’s Center for AIDS Research Behavioral and Community Sciences Core, which supports research on behavioral, environmental, economic and social HIV risk and protective factors in the Deep South. He has also

been a member of the National Network of Black Treatment Advocates, Black Gay Men’s Advocacy Coalition, The Pozitively Healthy National Steering Committee, HIV Prevention Network, State of Alabama Prevention Planning Council and the Jefferson County Alabama HIV/AIDS Community Coalition, among others.

“Somehow, this plague of a virus, this bull’s-eye of stigma and shame, became the springboard for my role as a leader,” he says. “As I once fought for my own life, I now apply those lessons learned to fight disparities in our communities.”

Eric Jannke Age 55 Palm Springs, CA

Eric is a founding member and president of Let’s Kick ASS Palm Springs (LKAPS), the Southern California branch of a multistate advocacy collective that brings together long-term survivors to advocate around issues affecting people aging with HIV. He has become a regular face at HIV/ AIDS conferences and attended this year’s AIDSWatch, USCA and International AIDS Conference. In California, Eric also volunteers for the Desert AIDS Project (DAP) and the HIV & Aging Research Project–Palm Springs and runs the newsletter for both organizations as well as one for LKAPS. He also serves as the chair of the client advisory board at DAP. He recently wrote and compiled the Kick ASS Manual, which addresses issues of HIV and aging through individual stories and medical papers.

Ronald Johnson Age 70 Silver Spring, MD

Just three years after his own HIV diagnosis in 1989, Ronald was named New York City’s first coordinator for AIDS Policy. He has also served on the Presidential Advisory Council on HIV/ AIDS and has held leadership roles at AIDS United. But Ronald, who retired last year, is perhaps best described by

those who know him as someone with an “unflagging and truly remarkable capacity for kindness and understanding.” Over the past three decades, he has made it his life’s mission to ensure that those living with HIV receive the care and support they need, and he has made a name for himself by showing compassion to those he serves.

Bryan Jones Age 58 Cleveland, OH

Bryan threw himself into AIDS advocacy immediately after his diagnosis in 1984. The Cleveland native founded The Dirt Advocacy Movement, whose main goal was to reach the most vulnerable and at-risk in his community. The actor and dramatist, who was a featured dancer in the film Mac and Me, uses the power of theater in his one-man show AIDS …

And I Die Slowly to educate people about the epidemic. Bryan also founded the educational support group Gentlemen’s Quarterly, is a board member of the national organization RAHMA, which supports and empowers Muslims living with HIV, and is a member of the steering committee for U=U.

Mary Frances Jones Age 60 Tampa, FL

Mary Frances has been involved with HIV education, testing and counseling since 1999, the same year she tested positive. A medical case manager at St. Joseph’s Hospital–TAMPA Care Clinic, she loves helping her clients become active managers of their own care. She solicits donations for children’s clothes and toys for clients in need and encourages local health care workers and pharmacies to participate in World AIDS Day events. Mary Frances was named St. Joseph’s World AIDS Day 2013 chairperson, an honor she earned through her compassion and dedication to the HIV-positive community over nearly two decades.

Perry Junjulas Age 53 Albany, NY

Perry started doing advocacy work at the Albany Damien Center in 1995, the year he was diagnosed with HIV, after visiting the center in search of solidarity with others diagnosed with the virus. Four years later, he became executive director of the organization.

For the past 20 years, Perry has worked tirelessly to bring a grassroots, peer-led, trauma-informed approach to care in his community, helping countless people living with HIV find housing, achieve durable viral suppression and access the care and support they need to live and thrive with the virus. He is a past recipient of dozens of HIV and LGBT advocacy-related honors, including the Harvey Milk Award and Housing Works’ AIDS Heroes, among others.

Pat Kelly Age 64 Orangeburg, SC

Pat is a founding member and board treasurer of PWN-USA and is the lead coordinator of the group’s People Organizing Positively grants from AIDS United. She’s also currently a trainer at Common Threads, a peer-led sustainable crafting collective of women living with HIV. Pat serves on the PLHIV Caucus, the South Carolina HIV Task Force, the South Carolina HIV Planning Council, the Minority AIDS Council of Orangeburg, Bamberg and Calhoun counties, and more.

She recently presented at the Sero Project’s latest HIV is Not a Crime summit and at USCA 2018 and was on the host committee for PWN’s 2018 Speak Up!: A National Leadership Summit for Women. Some say she is the Energizer Bunny of HIV activism!

Mark S. King Age 57 Baltimore, MD

Mark has spent more than 30 years fighting to destigmatize HIV. He began volunteering at local community AIDS

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50+ agencies in California for several years before he tested positive and eventually got a job as director of public relations for the Los Angeles Shanti Foundation. He later served as the education director of AID Atlanta. Mark is one of the most widely read HIV-positive writers in the world. His story of advocacy and recovery has been featured in numerous publications, including The Advocate, Newsweek, HuffPost, The Body, POZ and his award-winning blog, My Fabulous Disease. Mark’s prolific body of work has received honors from the National Lesbian and Gay Journalists Association, GLAAD, HIV Equal and Folio: magazine.

Kevin Koerner Age 59 Boston, MA

Kevin is the site manager and front desk supervisor—and longest-serving continuous staff member—at the Boston Living Center (BLC). “Kevin is someone everyone knows they can count on,” says the coworker who nominated him for this year’s POZ 100. He first joined BLC as a member in 1998, a decade after his HIV diagnosis. Two years later, he became the program coordinator assistant and then the full-time program coordinator, overseeing holistic services, arts, workshops and other member activities for the next three years. Before joining BLC, Kevin volunteered for three years with AIDS Action’s check-in program, calling clients once a month to see how they were doing. He also served on the Ryan White Planning Council. In his free time, he’s an oil painter.

Kenneth Lamb Age 55 Bellingham, WA

Since his 2006 HIV diagnosis, Kenneth has worked to end HIV/AIDS in Native communities across the Pacific Northwest, including the Lummi Nation and the Nooksack, Upper Skagit, Swinomish, Tulalip and Muckleshoot

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tribes. He has been instrumental in developing a number of HIV prevention and education projects in his community, bringing rapid HIV testing, hepatitis C prevention initiatives and new pre- and post-test counseling protocols to several tribal clinics across Washington. Colleagues say he has personally performed over 1,000 HIV tests on the front lines of the epidemic and pushes every day for increased screening and prevention through grants, brochure writing and on-the-ground advocacy.

Bob Leahy Age 71 Warkworth, Ontario

A well-known figure in the Canadian HIV community, Bob has volunteered for over 25 years helping those living with HIV. Diagnosed in 1993, he has served on the boards of the Canadian AIDS Society and the Ontario HIV Treatment Network and as chair of PARN, his local AIDS service organization (ASO). He has also used the written word in his advocacy. He is a former editor, publisher and writer for PositiveLite.com and is currently a blogger for POZ.com. A member of the Ontario AIDS Network’s Honour Roll and a recipient of the Queen Elizabeth II Diamond Jubilee Medal, Bob is now the Canadian lead on the U=U effort.

Kevin Lish Age 57 Pocatello, ID

Diagnosed with HIV in 1987, Kevin has been a longtime champion for HIV testing and acceptance for all those living with the virus. In 2012, he and his partner founded All Under One Roof, an LGBT center for bullied youth.

He has organized numerous community events and regularly appears on television to discuss HIV-related topics.

After attending the HIV is Not a Crime conference last year, he became one of the key forces behind IdahoHIVModernization.com, a grassroots coalition aiming to overturn the state’s harsh and outdated HIV criminalization

laws, which include charges for having sex without disclosing one’s HIV status even if no transmission occurs.

Abad Lopez Age 53 Los Angeles, CA

Abad immigrated to the United States from Mexico in 1997 and was diagnosed with HIV a year later. Since then, he has worked diligently to learn English, become documented, adapt to a new culture and find acceptance as an openly gay man. He is currently involved in clinical trials to eradicate HIV/AIDS and stays up to date on HIV research developments. Abad is a community adviser board member for the UCLA Care Center and for UCLA’s Center for HIV Identification, Prevention and Treatment Services, which promotes collaborative research, fosters networking and supports capacity building among HIV researchers and communities in efforts to eliminate new HIV infections and health disparities among key populations.

Michelle Lopez Age 51 Brooklyn, NY

Michelle is a survivor of domestic violence, homelessness and HIV. Since first hearing the phrase “You are HIV positive” in the early ’90s, she has spent decades working within her community to help others navigate the challenges she has faced.

She has worked with organizations like the Community Healthcare Network of New York, the New York Department of Health, the Bronx Community Pride Center and the CDC. Michelle is currently a consultant with ACRIA, and she’s the vice president of Caribbean AmericanPride, which provides prevention and linkage to care to the LGBT community in the Caribbean. She shares her story through The Long View Coalition and Gilead Sciences’ Never Alone video series, in which she discusses how important community can be to living, thriving and aging with HIV.

Randal Lucero

Steven Manning

Age 53 Albuquerque, NM

Age 53 San Antonio, TX

Diagnosed with HIV in 2004, Randal was recently elected to the board of directors of the National Native American AIDS Prevention Center and serves as the chair of Southwest CARE’s client advisory board. He was also named one of NMAC’s 2018 HIV 50+ Strong and Healthy Scholars, an initiative meant to build leadership among people over 50 living with HIV. He has been on the board of many HIV organizations, including the National Association of People With AIDS, where he worked for more than 12 years advocating for individuals and communities affected by HIV. He is founder of the New Mexico Aging and Long-Term Services HIV Advocacy & Outreach Program and is state consumer representative to the New Mexico Department of Health HIV Services Clinical Quality Management Committee. “What I am most passionate about,” he says, “is dispelling the myths that surround HIV/ AIDS so that those who are directly and indirectly affected are not the recipients of unfair treatment.”

Enjoying a healthy life while HIV positive can be difficult when you’re also dealing with alcohol and drug use. When Steven, a recovering alcoholic, got sober seven years ago (he’s been living with HIV for the past 30 years), his viral load became undetectable and has remained so ever since. Knowing that the HIV community sees high rates of substance and alcohol use disorders, Steven started a support group for men living with HIV and a history of substance use. No stranger to speaking out, he’s the cochair of the San Antonio Area HIV Health Services Planning Council. He served as the cochair of the Bexar County HIV/ Syphilis Testing Task Force and is involved with the End Stigma, End HIV Alliance in San Antonio. Steven often participates in panel discussions and was named an NMAC 2018 HIV 50+ Strong and Healthy Scholar.

Carlos Maldonado Age 67 New York, NY

Carlos’s advocacy career stretches back to 1972 in Puerto Rico, when he cofounded Comunidad de Orgullo Gay, widely recognized as the island’s fi rst LGBT organization. Soon after, he moved to New York City, one of the epicenters of America’s early AIDS crisis, where he joined ACT UP and spent years promoting access to HIV medication in Latin America and the Caribbean. Today, he directs the program Puente Para la Salud (Bridge to Health) at New York City’s Latino Commission on AIDS, a capacity-building program for Latino gay and bi men and trans Latina women over 40. His current work focuses on educating older adults living with and at-risk for HIV as well as on long-term survivors.

Eunice Marshall Age 62 Houston, TX

Eunice and her husband, Kalvin, were married in 1984. In 2007, they were both diagnosed with HIV, and after becoming involved in various support groups, their advocacy journey began. Eunice helped to organize and was a facilitator for Women with a Purpose, an HIV support group for women, and joined PWNUSA and PWN-USA Greater Houston as the secretary and treasurer. In 2012, alongside Kalvin, she started a group for heterosexual couples living with HIV. Among many other acts of advocacy, the Marshalls have organized for National Black HIV/AIDS Awareness Day and were in the inaugural

Eric Jannke

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.

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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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class of the Positive Organizing Project. On each World AIDS Day, Eunice participates in the reading of the names of individuals who lost their battles with HIV.

Kalvin Marshall Age 62 Houston, TX

Kalvin and his wife, Eunice, were both diagnosed with HIV in 2007. At age 50, they dealt with self-stigma and isolation for a year before they vowed to reach out to others living with HIV and struggling with their diagnoses. Alongside his wife, Kalvin became a peer support group facilitator for the Bering Spiritual Support Group in Texas. He served as an external member on the Ryan White Planning Council on the Affected Community Committee for three years, helped to start Positive 713 and joined Living Without Limits Living Large, an organization for heterosexuals living with the virus. Today, you can find them at an awareness table at Legacy Community Health in Houston, where they lend a face and voice to the virus and hand out educational literature and condoms. Cheers to this dynamic duo!

vention to girls ages 5 to 12 at the Church of the Open Door and at a public school, both in Brooklyn. Joyce has 11 grandchildren and two greatgrandchildren and likes to rap with them. She speaks publicly about her experiences often in order to inspire others, declaring, “HIV/AIDS is not the end; having no hope is.”

Aaron Myatt Enrique Menendez Age 53 New York, NY

Diagnosed with HIV in 1989, model and performer Enrique is currently participating in a New York University Drama Therapy Department project tentatively titled Living with…, which explores living with HIV today. He was named HIV Hero of the Month in January by HIVHero.org.

Enrique is featured in the 2017 documentary short Hep C Free, in which he talks about his journey with both HIV and hepatitis C. His short film AboutFace was featured at the 2007 New York AIDS Film Festival. He is also a talent scout and casting director for Proof Positive, an agency that represents HIV-positive models. His image will soon appear in artist Frank Yamrus’s exhibit The Long Term Survivor Project.

Joyce McDonald Age 66 Brooklyn, NY

A self-taught prizewinning sculptor and painter, poet and songwriter, Joyce is first and foremost a survivor.

She has overcome sexual molestation, drug addiction, intimate partner abuse and a 1999 AIDS diagnosis to become—through example and through her ministry—an educator and a warrior against HIV stigma.

An artist member of Visual AIDS since 1996, she was ordained and licensed to preach the Gospel in 2009.

In 2011, she became a member of the New York State Chaplain Task Force, which facilitates ministering throughout the state. She started an initiative called “Keep Your Pearls Girls,” which teaches basic HIV pre-

Seminary and plans to use her degree to help eradicate HIV stigma in the religious community. It’s no wonder that she received an award two years in a row for being the student whose social justice work most represents the connection between church and society.

Age 50 Nashville, TN

Aaron has been employed with Nashville CARES since 1997. He began working part-time in the alcohol and drug day program and then worked as an intern for one year while going to school for his master’s degree in social work. He’s currently the associate director of medical case management and eligibility services and oversees a staff that ensures access to Ryan White services and provides adherence counseling to their clients. In addition, Aaron is on Nashville CARES’ leadership team and is a mentor to the 30 percent of the staff who are living with HIV. He recently turned 50 and just marked the 25th anniversary of his HIV diagnosis. “Living with HIV past 50 wasn’t something my younger self could have ever pictured,” Aaron says, “but now that it’s here, I am looking ahead.”

Susan Mull Age 65 Quarryville, PA

This year is Susan’s 25th anniversary of thriving with HIV. She is a teacher, an advocate, a poet, a writer and an activist who has spent the last two decades speaking out to show people there is no shame in having HIV. Diagnosed in 1993, Susan was selected two years later by the mayor of Philadelphia to serve on the city’s HIV commission. Since then, she has attended and spoken at many of the world’s top HIV/AIDS conferences, including those sponsored by the CDC, the Sero Project, SisterLove, PWN-USA and the International AIDS Society. In May 2018, she graduated from the Lancaster Theological

Eric Novak Age 62 Columbus, OH

Living with AIDS has not defined Eric, but it has been the driving force in how he lives his life. For the last four years, he has been a member of Equitas Health’s (formerly AIDS Resource Center Ohio) client advisory committee and is currently in his second year as chairman. He sits on both the Ohio State University’s AIDS Clinical Trials Unit and the HIV Prevention Trials Network’s community advisory boards. He is also a voting member of the Central Ohio HIV Planning Alliance for Ryan White. Last year, Eric developed and moderated a

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50+ panel discussion on long-term survivors at the Transforming Care Conference in Columbus. He plans to focus his advocacy on the growing longterm-survivor population as he continues to survive and thrive.

Charlie Palmer

Osvaldo Perdomo

Age 52 Joliet, IL

Age 59 New York, NY

Diagnosed with HIV in 2000, Charlie has been an active advocate in the Will County area since 2005 and has worn many hats. He’s currently a peer advocate at Regional CARE Association, a Joliet-based agency that provides medical and counseling services for people living with HIV as well as HIV awareness and prevention services for the community at large.

Whether he’s passing out condoms in the streets or working tirelessly in the office doing HIV testing and outreach, Charlie is always the one you want on your team.

He might not have traveled the world fighting the epidemic, but fortunately for those in Will County, he’s getting the job done at home.

Osvaldo, the secretary and cochair of the development committee at GMHC, isn’t passionate only about HIV advocacy—he’s also an art lover.

He is the cocurator of the Art & AIDS exhibitions, a project that has him directing and planning annual shows featuring more than 40 GMHC artists living with HIV—as well as creating panels with leaders from the community to supplement the exhibitions. Osvaldo previously worked as a co-facilitator for HIV support groups at New York’s LGBT community center, and he spoke about HIV prevention to high school students as part of Friends In Deed. These days, he also organizes fundraisers and events for GMHC, including “Light Up New York,” an HIV awareness initiative started in 2014 that lights iconic New York buildings red during the week leading up to AIDS WALK New York.

Jesse Peel Age 78 Atlanta, GA

Rosa Rivera

Jesse, a retired psychiatrist, long-term survivor of HIV and avid theater fan, has advocated and allied with nearly every ASO in his hometown of Atlanta. He is a founding member of the original Atlanta Buyers Club and sat on the founding boards of AID Atlanta, Positive Impact and a number of HIV advisory boards across the city. In his spare time, Jesse can be found dispensing advice to local advocates in cafés across the city, hosting one of his infamous Sunday afternoon parties (an Atlanta staple for over 30 years) and volunteering with Lost and Found, an Atlanta agency that assists homeless LGBT youth. He may have retired, but clearly he hasn’t stopped working.

Robert Pompa Age 55 Allentown, PA

Feeling hopeless after his HIV diagnosis at age 38, Robert decided to turn his despair into fuel for fi nding his purpose. He is currently the behavioral change specialist and prevention coordinator for the Lehigh Valley Health Network AIDS Activities Office. He raises awareness by educating others about the virus and by emphasizing the importance of testing and treatment as prevention.

He advocates for awareness regarding stigma and trauma-informed care and serves on multiple boards, councils and groups, including the HIV Planning Group for the State of Pennsylvania, the Pennsylvania Special Pharmaceutical Benefits Program Advisory Council and the CDC’s Medical Monitoring Project Advisory Board. Robert believes there is still much work to do to eradicate the stigma that surrounds those three silly letters: H-I-V.

Rob Quinn

Lepena Reid

Rosa Rivera

Age 59 Boston, MA

Age 62 Tampa, FL

Age 56 San Juan, Puerto Rico

After attending USCA in 2017, Rob received a mini-grant that allowed for the creation of a Community Wellness Day in April at the Boston Living Center (BLC) that focused on healthy aging for those living with HIV 50 and older. Diagnosed in 1993, he remains focused on advocating for older members of the HIV community and longterm survivors. In addition to serving as an HIV-positive advocate with BLC, he is on the Statewide Consumer Advisory Board at the Massachusetts Department of Public Health Bureau of Infectious Disease and Laboratory Sciences and on Boston’s Ryan White Planning Council. Plus, he serves as resource faculty for the New England AIDS Education and Training Center.

Rob founded Working POZ, a peer-led support group for those living with HIV in the workplace, and OpenlyPoz.com, an online resource that aims to empower and support others living with HIV. He was also named one of NMAC’s 2018 HIV 50+ Strong and Healthy Scholars.

Lepena recognizes that self-acceptance is key to living with HIV. Although testing HIV positive in 1988 was a real challenge, she finds celebrating 62 years of life empowering. She attributes her resilience to teaming with fierce women’s organizations across the country; she is a member and media spokesperson for PWN-USA and a micro enterprising artist/trainer with Common Threads, a peer-led HIV training that is designed to increase self-esteem, sociability, economic wellbeing and HIV self-management. In 2012, she was inducted into the 2020 Leading Women Society by SisterLove.

As a certified health educator and advisory board member with Florida Coalition, she believes that women should not be fearful when navigating services and that comprehensive health care is a right, not a privilege.

Lepena is thrilled to see the modern advancement of PrEP and scientific evidence of U=U. Discoveries like these, along with continuing education, affirm that she can embrace life and remain sexy for years to come!

Rosa has never believed that she’s living with HIV but that “Crunch” lives with her. This empowering way of thinking helped her overcome her initial depression and encouraged her to live her life as a fierce AIDS activist in Puerto Rico. Since her diagnosis in 1997, she has been involved in the Funding Ryan White Planning Group, the Advisory Committee for ADAP, the Coalition Cero VIH PR and other advocacy organizations. She has also represented Puerto Rico as a delegate at conferences such as AIDSWatch, HIV is Not a Crime, PWN-USA’s Speak Up! Summit and USCA, where this year she was named an NMAC HIV 50+ Strong and Healthy Scholar.

Melanie Reese Age 66 Baltimore, MD

Melanie is the executive director of Older Women Embracing Life (OWEL), the only organization in Maryland specifically for HIV-positive women over 50. As an advocate, she spends her days empowering women with greater self-advocacy and helps them to improve their health outcomes despite related challenges.

Melanie also serves on several community advisory boards at other ASOs across the city. She recently served two terms as the chairwoman of the Greater Baltimore Ryan White Planning Council and is an appointed member of Maryland’s HIV Planning Group. She is described as a dedicated leader with a never-ending charge to reduce new infections, discrimination, shame and stigma for those infected and affected by the virus.

Robert Riester Age 57 Denver, CO

Diagnosed with HIV in 1987, Robert works part-time at Mile High Behavioral Healthcare as a program coordinator for the Positive Impact program and as a community liaison. In his nearly 25 years of HIV advocacy, he has been president and founding member of Friends In Need NPO in Amarillo, Texas; a member and cochair of the Denver HIV Resources Planning Council; an International AIDS Conference delegate; an NMAC HIV 50+ Strong and Healthy scholarship recipient; and an appointee to the Denver Commission on Aging.

He is passionate about enhancing, promoting and elevating HIV/AIDS advocacy and activism. In his spare time, Robert enjoys artwork, photography and horticulture.

Raul Robles Age 59 San Diego, CA

Diagnosed with HIV in 1985, Raul has been a volunteer at The San Diego LGBT Community Center since 2005, serving as a role model for others living with HIV and for those newly diagnosed. Working primarily with Spanish-speaking clients—for whom he recently started a support group for long-term survivors—Raul shares his experiences on living a healthy and productive life with HIV. His transparency and honesty about his HIV status has helped reduce stigma in the local Latino community. For the past four years, he has served as chair of the consumer committee for the San Diego HIV Planning Group. He was the recipient of the Health Line 2017 HIV Influencer Honors and was included on The 41 List in 2015 for being a role model in the Latina/o LGBTQ community.

Michael Rouppet Age 50 San Francisco, CA

As he fought eviction from a rentcontrolled apartment in San Francisco in 2012, Michael became homeless for

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50+ nearly three years. During this time, the long-term survivor found it difficult to access care and treatment. At one point, he feared he might develop AIDS. Fortunately, he received support from friends in the homeless community and from ASOs and decided to give back—and fight stereotypes about homeless people—by helping to raise over $3,600 in the annual AIDS/LifeCycle ride, which benefits free programs and services at the San Francisco AIDS Foundation.

He also rode in memory of those he’d lost to AIDS. Michael helped create Marty’s Place, a tenant-based housing model co-op that provides support to low-income people living with HIV. Today, he’s the president of the board.

He also volunteers at the Housing Rights Committee of San Francisco, where he continues to fight for housing rights as a tenant counselor.

duced coma, the result of undiagnosed HIV. “I decided to use my big mouth and sense of humor to become an HIV advocate,” he recalls. “Of course, first I had to learn to walk again.” He also had to get sober. Today, he’s singing, dancing and acting his activist heart out as the star of the web series Merce.

Now in postproduction for its second season, the musical series follows the unapologetically gay, jazz-handy middleaged Merce, who has HIV but isn’t sad or sick. Charles also writes about his HIV-related experiences for Positively Aware, TheBody.com, HuffPost Queer Voices, Them.us and others. In his work, he likes to break HIV stereotypes and promote the U=U message.

He recently conquered Broadway—in a photo shoot for the October/November cover of POZ. This Charles is definitely in charge!

Steve Schalchlin Thomas Sampson Age 51 Chicago, IL

Thomas, also known as “Tommy Avant Garde,” has been advocating for HIV prevention for over 30 years—and he does it in style. Diagnosed with HIV in 1992, he currently works for the Southside Health Advocacy Resource Partnership, a community mobilization group that helps to empower the community. Since 2003, he has also been the “headmaster” of the School of Opulence, a creative venture that teaches the art of voguing while addressing HIV awareness. Thomas advocates for prevention in the ballroom scene and oversees a leadership council of young adults in the community.

Thomas’s work transcends all populations, nationalities and genders— and generational gaps. For that, he gets 10s across the board!

Age 65 New York City, NY

Widely regarded as one of the first HIV/AIDS bloggers, Steve was ahead of the curve in 1996 when he started documenting his journey with HIV by writing about his daily life to keep his family in the loop about his health.

He noticed that strangers were taking an interest, and soon he developed an online following. After he started taking a new medication, his health vastly improved, and he began to share stories about his travels, his songwriting and the award-winning musical he wrote, titled The Last Session, with his partner, Jim Brochu.

The couple also wrote and performed The Big Voice: God or Merman?, about their marriage. Steve’s blog, Living in the Bonus Round, has been going strong for two decades, and he now uses the platform to share the realities of aging with HIV through his writing and his “wicked” sense of humor.

Charles Sanchez Age 50 New York City, NY

Charles learned he had AIDS in 2003 after waking up from a medically in-

56 POZ DECEMBER 2018 poz.com

Scott Schlaffman Age 60 Minneapolis, MN

For 26 years, Scott has been “the most

dedicated volunteer” at The Aliveness Project, a community center for and driven by people living with HIV in Minnesota. In the late ’90s, Scott was executive director for the center. Today, he’s a member of the board of directors and volunteers as the charitable gaming coordinator. Scott has helped raise over $250,000 in proceeds annually for the organization. These funds are critical to maintaining the overall operations of the center, which provides essential services to those living with HIV, including a food shelf, meal program, medication assistance, housing resources, HIV education and a full-time dietitian who specializes in HIV-related nutrition.

Harold R. “Scottie” Scott Age 56 Lebanon, TN

On World AIDS Day in 1994, in an effort to bring awareness to the epidemic and to educate others, Scottie shared his personal story of living with HIV in a rural environment. He’s been an advocate ever since. Scottie has been part of various committees for Ryan White funding, including serving as a cochair. In 2017, he wrote and published If I Were Brave, a book that chronicles his HIV journey. A portion of the book’s sales went to Nashville CARES. For over 20 years, Scottie has worked as a “one-man movement” to serve as a voice for those who cannot live publicly with their HIV status.

Chanelle Sessooms Age 62 New York, NY

Chanelle does amazing work doing outreach for transgender and gendernon-conforming communities in New York City. She currently works in the sexual reproductive justice/policy department at GMHC, where she educates and encourages folks to attend workshops and speaks out about how important it is for trans people to feel empowered in their bodies. Chanelle also works with the public policy de-

partment on HIV/AIDS education and prevention and advocates for sex workers’ rights, access to health care and the HIV-positive community. She is an active member of her church, a frequent visitor/volunteer at Riker’s Island—where she offers spiritual guidance to inmates—and an incredibly positive and determined force in her community.

Robert (Bob) Skinner Age 68 Corvallis, OR

Bob has been involved in HIV/AIDS advocacy since 1981—since the fi rst time he heard about the virus on the evening news. After losing many of his close friends to AIDS, he discovered in 2000 that he, too, was HIV positive. Diagnosed with AIDS on his 50th birthday, he was told he had only a few months to live. But he immediately started treatment and gave up drugs and alcohol. He decided to learn more about HIV and underwent volunteer training at the Valley AIDS Information Network in Oregon.

Now, he’s the president and CEO of VAIN and the community cochair of the Oregon State Prevention Group.

He recently retired from his role as a master trainer for Stanford University’s “Living a Healthy Life with HIV” program. Alongside his partner of 17 years, Bob says he is “living and thriving with HIV/AIDS.”

Winthrop Smith Age 63 Augusta, ME

Winthrop is a writer and poet who has spent more than 30 years giving back to the LGBT and HIV communities.

After his own diagnosis in the 1980s, Winthrop started working at the National AIDS Hotline, providing support and answering questions about the epidemic. He also ran a drop-in support group for HIV-positive men in New York City and was a home attendant and case worker for terminal AIDS patients through the New York office of Home Care America. He sat

on the board of the People with AIDS Coalition/NY and was the cochair of the community advisory board for the AIDS Support Group of Cape Cod. After moving to Maine, Winthrop launched Augusta’s EGR Writers House, a creative residency that offers subsidized housing to LGBT writers. His creative practice currently focuses on remembering those in the arts lost to AIDS, most recently, the men featured in the portraits of artist Larry Stanton.

William Snow Age 71 Forestville, CA

William has advocated for HIV vaccines since 1990. Five years later, he and eight other HIV treatment activists founded AVAC. He was heavily involved in writing the fi rst of several AVAC reports and the fi rst edition of the widely used HIV Vaccines Handbook. Currently a senior adviser at AVAC, William spent nearly five years as director of the Global HIV Vaccine Enterprise Secretariat, which represents the alliance of independent organizations globally dedicated to accelerating the development of a preventive HIV vaccine.

Among his many accomplishments, he was instrumental in establishing national, local and global community advisory boards at the several National Institutes of Health clinical trial networks.

William has also served a term on the Office of AIDS Research Advisory Council and was an original member

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50+ of the AIDS Vaccine Research Committee. He’s been a part of almost every HIV vaccine group’s advisory committees and boards.

Steve Stagon Age 67 Fort Lauderdale, FL

Steve—along with members of his support group—had a dream to create the very first museum dedicated to the HIV epidemic. In 2014, thanks to 70 donors and a large charitable grant, that dream came true and the doors to the World AIDS Museum and Educational Center opened in South Florida. Under his watch, the museum boasts an array of innovative and powerful exhibits, hosts a series of high-profile events with iconic and emerging HIV activists and does community outreach in local schools focusing on HIV, stigma and more. Before founding the museum, Steve worked for AIDS Health Foundation, providing STI testing in the community.

Tom Straley Age 56 Minneapolis, MN

Tom has spent more than 25 years volunteering for his community in Minneapolis. A lot of people know him from the front desk at The Aliveness Project, a community center created by and for people living with HIV (he also sits on the board of directors). Others know him from his glamorous blonde alter ego, Crystal Balls, who donates thousands of dollars earned from her drag performances with the Imperial Court of Minnesota and the North Star Gay Rodeo Association. Tom also raises thousands of dollars a year for The Aliveness Project through Dining Out for Life, an annual fundraising event, and sits on the board of directors for Camp Benedict, a free summer camp for families living with HIV. He is also a peer educator with JustUs Health, where he shares his experience as a long-term survivor.

58 POZ DECEMBER 2018 poz.com

John Tenorio Age 53 Canon City, CO

John is currently the executive director of the National Native American AIDS Prevention Center in Colorado.

Diagnosed in 2006, he began his HIV advocacy soon after, with the major goals of strengthening the lives of Native Americans living with HIV/AIDS, educating the community about the disease and prevention, and reducing stigma. In addition, the father of two is part of the BLOC Building Leaders of Color and was named a 2018 HIV 50+ Strong and Healthy Scholar at this year’s USCA. He’s currently being evaluated for a new kidney and hopes to receive a transplant soon.

John will never stop fighting for a seat at the table.

spent much of his life educating LGBT people of color about HIV and AIDS through the house and ball scene in New York City. He has mentored and counseled generations of queer young people in the art of voguing and how to negotiate safer sex. Hector has participated in GMHC’s House of Latex Ball since its inception in 1990; the event raises HIV awareness and is the largest of its kind. He also regularly volunteers for GMHC and other community-based organizations. Most recently, Hector lent his expertise to Ryan Murphy as a consultant on his hit TV series Pose, which is set in the 1980s and features several prominent HIV storylines. This legend’s influence and positive messaging are thankfully now reaching the masses.

Michael “Zee” Zalnasky Larry Watson Age 53 Hackensack, NJ

Diagnosed in 1988, Larry is a harm reduction counselor at the Bronx Shelter ACT Team/Community Access. He is a passionate, team-oriented pro who guides people into treatment, housing and medical care. He works with a variety of populations, including people with substance use disorders, people living with HIV/AIDS, the LGBTQ community and people who are homeless, living with mental illness or reentering the community after incarceration. Following a recent stroke, Larry was back to work in less than two weeks. He regularly walks up to people on the street with offers of help and visits people in the hospital who aren’t even in his caseload.

While in federal prison, Larry started the NEED-2-KNOW program, through which he gave every fellow inmate who took an HIV test $5 from his own commissary account.

Age 58 Wilton Manors, FL

Even if you’ve never met him or chatted with him via @ZeeStrong, chances are, you’ve seen Michael’s work. After battling a mysterious illness and weight loss, Zee learned he had AIDS in 2014. He immediately told his daughter and then, via email, his 4,000 coworkers. Since then, he’s been helping others announce their status and fight stigma on social media and advocates for other heterosexuals with HIV. Zee created the Facebook group AIDS HIV Survivor Living Memorial, a collection of thousands of photos of people in the HIV community. He creates digital frames around the pictures along with words describing the person’s positive traits. Portraits are organized into over 60 albums, with campaign titles such as “I am a Face of AIDS and I Will Not Hide,” “I Want a Cure” and “HIV+ Women, Strong Active Healthy.” People across the globe seek out Zee’s frames. Check them out by searching #TheDigitalLivingQuilt and #AIDSHIVSurvivorLivingMemorial. ■

Hector Xtravaganza Age 60 Bronx, NY

As the cofounder and grandfather of the House of Xtravaganza, Hector has

Written by Meave Gallagher, Cameron Gorman, Alicia Green, Casey Halter, Joe Mejía, Tim Murphy, Trent Straube and Kellee Terrell

Find your local HIV/AIDS health care and service organizations.

The POZ Health Services Directory now features a new responsive platform, simplifying access from desktop to mobile. Use the directory to find local organizations that provide assistance with everything from insurance to transportation.

poz.com/directory

Statement of Ownership, Management and Circulation

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POZ

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Monthly, except Jan/Feb, Apr/May, July/ Aug & Oct/Nov

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6. Annual Subscription Price

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Smart + Strong 212 West 35th Street, 8th Floor, New York, NY 10001 Ian Anderson 212.938.2051

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Smart + Strong 212 West 35th Street, 8th Floor, New York, NY 10001

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The Publisher is Ian Anderson; the Editor in Chief is Oriol Gutierrez; the Managing Editor is Jennifer Morton. Their address is 212 West 35th Street, 8th Floor, New York, NY 10001

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c. Total Paid and/or requested Circulation (Sum of 15b) d. Nonrequested Distribution 1. Outside County Nonrequested Copies Stated on Form 3541 2. In-County Nonrequested Copies 3. Nonrequested Copies Distributed Through the USPS by Other Classes of Mail 4. Nonrequested Copies Distributed Outside Mail

POZ is Owned by CDM Publishing, LLC and Jeremy Grayzel. Smart + Strong 212 West 35th Street, 8th Floor, New York, NY 10001

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Publication required. Will be printed with the December 2018 issue of this publication 17. Signature and Title of Editor, Publisher, Business Manager or owner I certify that all information furnished on this form is true and complete. I understand that anyone who furnishes false or misleading information on this form or who omits material or information requested on the form may be subject to criminal sanctions (including fines and imprisonment) and/or civil sanctions (including civil penalties). Ian Anderson, President, September 20, 2018

HEROES

BY ALICIA GREEN

Krishna Stone was one of more than 4,500 walkers at the first annual AIDS Walk New York in 1986. The historic fundraising event would mark the beginning of Stone’s long relationship with the world’s first provider of HIV prevention, care and advocacy.

“The catalyst for me was the deaths of people I knew and loved,” says Stone, 59, an HIV-negative advocate who has been employed at Gay Men’s Health Crisis (GMHC) for 25 years.

“I remember arriving at Lincoln Center [for the AIDS Walk] and just being awed by the number of people who had shown up.”

Stone began to volunteer with GMHC soon thereafter. She helped folks sign up for the AIDS Walk, was involved in GMHC’s first AIDS Dance-a-Thon and even distributed condoms at subway stations.

In 1992, she became a full-time consultant with the volunteer department and was hired as assistant coordinator of outreach the next year.

“One of my first tasks was to try to recruit volunteers in the boroughs outside Manhattan to become ‘buddies,’” Stone recalls. “That’s when the Buddy Program was a signature program.”

(Buddies are volunteers in the Buddy Program who provide emotional support to GMHC clients.)

Stone was heavily involved in volunteer recruitment and outreach, event planning and technical assistance.

Fifteen years ago, she was recruited to join GMHC’s communications department. She was promoted to assistant director of community relations three years later.

“I understood what it meant to work with the media, especially coming from the home of two journalists,” Stone says. “I learned more about communications work, took workshops and just kept building my skills.”

In 2015, Stone became director of community relations. She writes media alerts, coordinates media interviews, helps to develop public service campaigns and organizes community events.

Although she has planned countless events for GMHC, one of her favorites was the demonstration “We’re Not Dolls! Don’t Play With Women’s Lives!” for National Women and Girls HIV/AIDS Awareness Day in 2009.

“We were able to get people to bring a ton of dolls,” Stone remembers. “We put them on the steps of New York City Hall.” The dolls represented women and girls living with or affected by HIV. Stone’s commitment hasn’t gone unnoticed.

Four years ago, she received an award from the city’s health department for her outstanding dedication to combating the spread of HIV. In 2017, she received a proclamation from Governor Andrew Cuomo for her dedicated service and continuing contributions to New York state.

“It’s overwhelming to know that I’ve been doing this work for a quarter of a century,” says Stone, who has no desire to retire. “It’s an honor to work at GMHC. It’s an honor to be celebrated.”

60 POZ DECEMBER 2018 poz.com

Krishna Stone marks 25 years at GMHC.

BILL WADMAN

Community Relations

SURVEY

10

Do you need to take your HIV meds with food?

❑ Yes ❑ No 11

When do you take your HIV medications? (Check all that apply.)

❑ In the morning ❑ In the afternoon ❑ In the evening 12

Do you use any reminders to take your HIV meds?

❑ Yes ❑ No

TIME AFTER TIME Taking every dose of your HIV meds exactly as prescribed by your health care provider, is essential to halt HIV replication and keep your viral load suppressed. POZ wants to know about your drug adherence and what you do to make sure you take your medications on time.

1

13

Do you carry or store your HIV meds in a special case? ❑ Yes ❑ No

14

Have you ever run out of your HIV meds?

❑ Yes ❑ No 15

❑ ❑ ❑ ❑ ❑ ❑ ❑

Are you currently taking antiretroviral meds for HIV?

❑ Yes ❑ No 2

In the past month, did you miss any doses of your HIV medications? If so, how many?

❑1 ❑2 3

4

16

❑ 3 or more ❑ I did not miss a dose.

Do you tell your doctor or health care provider if you miss a dose?

6

ISTOCK

Ran out of HIV meds Unable to afford HIV meds Other (please specify): ___________________

Where do you get your HIV medications?

What is your gender?

❑ Male ❑ Female ❑ Transgender ❑ Other

If you miss a dose, what do you do?

❑ Take the meds as soon as I remember ❑ Wait until my next scheduled dose to take the meds ❑ Depends on how long it’s been since I missed the dose

19

Have you ever taken a double dose by mistake?

20 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): ___________________

Are you resistant to any class of drugs?

Is your viral load undetectable?

Have you ever switched meds to improve adherence?

❑ Yes ❑ No

What is your sexual orientation?

❑ Straight ❑ Bisexual ❑ Gay/lesbian ❑ Other

❑ Yes ❑ No ❑ I don’t know.

9

Fell asleep

18

❑ Yes ❑ No ❑ I don’t know.

8

Not feeling well

What year were you born?__ __ __ __

❑ Yes ❑ No 7

Drug or alcohol use

17

❑ Yes ❑ No ❑ Sometimes 5

Didn’t carry HIV meds when traveling

❑ Local pharmacy ❑ Mail-order pharmacy ❑ Prison or other correctional institution ❑ Other (please specify): ___________________

Have you ever missed several doses in a row?

❑ Yes ❑ No

Other than simply forgetting, what reasons have you had for missing a dose? (Check all that apply.)

21

What is your ZIP code? __ __ __ __ __

Please fill out this confidential survey at poz.com/survey or mail it to: Smart + Strong, ATTN: POZ Survey #232, 212 West 35th Street, 8th Floor, New York, NY 10001

Love is more than possible Let’s Grow Old Together

®

Peter and Kathy didn’t let his HIV status get in the way of their love.

Hear their inspiring story at Walgreens.com/LetsGrowOldTogether.

©2018 Walgreen Co. All rights reserved.

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