POZ September 2019 by Smart + Strong

A SMART+STRONG PUBLICATION SEPTEMBER 2019 POZ.COM $3.99

H E A L T H ,

L I F E

H I V

Older and Wiser Researching aging and HIV

Jeff Taylor

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

(bik-TAR-vee)

MOST IMPORTANT INFORMATION ABOUT BIKTARVY

POSSIBLE SIDE EFFECTS OF BIKTARVY

BIKTARVY may cause serious side effects, including:

BIKTARVY may cause serious side effects, including: ` Those in the “Most Important Information About BIKTARVY” section. ` Changes in your immune system. Your immune system may get stronger and begin to fight infections. Tell your healthcare provider if you have any new symptoms after you start taking BIKTARVY. ` Kidney problems, including kidney failure. Your healthcare provider should do blood and urine tests to check your kidneys. If you develop new or worse kidney problems, they may tell you to stop taking BIKTARVY. ` Too much lactic acid in your blood (lactic acidosis), which is a serious but rare medical emergency that can lead to death. Tell your healthcare provider right away if you get these symptoms: weakness or being more tired than usual, unusual muscle pain, being short of breath or fast breathing, stomach pain with nausea and vomiting, cold or blue hands and feet, feel dizzy or lightheaded, or a fast or abnormal heartbeat. ` Severe liver problems, which in rare cases can lead to death. Tell your healthcare provider right away if you get these symptoms: skin or the white part of your eyes turns yellow, dark “tea-colored” urine, light-colored stools, loss of appetite for several days or longer, nausea, or stomach-area pain. ` The most common side effects of BIKTARVY in clinical studies were diarrhea (6%), nausea (6%), and headache (5%).

` Worsening of Hepatitis B (HBV) infection. 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 if you: ` Have or have had any kidney or liver problems,

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.

including hepatitis infection. ` Have any other health problems. ` Are pregnant or plan to become pregnant. It is not known if BIKTARVY can harm your unborn baby. Tell your healthcare provider if you become pregnant while taking BIKTARVY. ` Are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed. HIV-1 can be passed to the baby in breast milk.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.FDA.gov/medwatch, or call 1-800-FDA-1088. Your healthcare provider will need to do tests to monitor your health before and during treatment with BIKTARVY.

HOW TO TAKE BIKTARVY

Tell your healthcare provider about all the medicines you take:

Take BIKTARVY 1 time each day with or without food.

` Keep a list that includes all prescription and over-the-

GET MORE INFORMATION

counter medicines, antacids, laxatives, vitamins, and herbal supplements, and show it to your healthcare provider and pharmacist. ` BIKTARVY and other medicines may affect each other.

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

Get HIV support by downloading a free app at

MyDailyCharge.com

` 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, KEEP ASPIRING, LOVE WHAT’S INSIDE, GILEAD, and the GILEAD Logo are trademarks of Gilead Sciences, Inc., or its related companies. Version date: December 2018 © 2019 Gilead Sciences, Inc. All rights reserved. BVYC0102 01/19

PZA506720A.pgs 01.25.2019 19:50

ESA

KEEP ASPIRING. Because HIV doesn’t change who you are. BIKTARVY® is a complete, 1-pill, once-a-day prescription medicine used to treat HIV-1 in certain adults. BIKTARVY does not cure HIV-1 or AIDS.

Ask your healthcare provider if BIKTARVY is right for you. To learn more, visit BIKTARVY.com.

Please see Important Facts about BIKTARVY, including important warnings, on the previous page and visit BIKTARVY.com.

PZA506720B.pgs 01.25.2019 19:50

ESA

CONTENTS

EXCLUSIVELY ON

POZ.COM

Paul Kawata has served as executive director of NMAC for 30 years.

#POZ AT 25

SILVER ANNIVERSARY When POZ launched in 1994, effective treatment was still two years away. Much has changed for the better since then, but as stigma and lack of access to treatment both demonstrate, Y E A R S many challenges still remain for people living with HIV. Go to poz.com/25 for a look back at our coverage over the years, from celebrity proﬁles to personal stories.

#UNDETECTABLE

SCIENCE, NOT STIGMA

#ADVOCACY

MAKE A DIFFERENCE

26 OLDER & WISER HIV long-term survivors contribute to better futures for everyone. BY MATT SHARP AND TRENT STRAUBE

Fighting against HIV/ AIDS has always been a struggle. Much work remains to end the epidemic. POZ encourages you to get involved in advocacy. Go to poz.com/advocacy to ﬁnd the latest news and learn how you can make a difference in the ﬁght.

38 YOURS IN THE STRUGGLE Paul Kawata reﬂects on 30 years of service at NMAC. BY ORIOL R. GUTIERREZ JR.

POZ DIGITAL

READ THE PRINT MAGAZINE ON YOUR COMPUTER OR TABLET

32 25 YEARS OF CELEBRITIES Our esteem for their HIV activism—on or off the red carpet—is constant. BY MARK S. KING

3 FROM THE EDITOR

17 EVERYDAY

Better Together

Milestones in the epidemic

6 POZ Q+A

20 CARE AND TREATMENT

The Prevention Access Campaign builds on its success with a new executive director of North America.

11 POZ PLANET POZ at 25: September issues from the archives • two HIV researchers discuss their new books on resilient gay men and HIV-positive women • a rainbow warrior

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

Shawn Decker shares his journey from being a kid with no real treatment options to starting his first one-a-day regimen, and Andrew Spieldenner, PhD, explores the concept of gratitude in the HIV field.

Rapid treatment works • women’s longterm risk of developing a detectable viral load • long-acting HIV meds poised for approval • hep C treatment works really well

25 RESEARCH NOTES Final results from the PARTNER2 trial • fast-track status for PRO 140 • participant in a vaccine trial transmits HIV • disparities in HIV between Black and white women

40 HEROES LaTrischa Miles was one of 28 women who helped create the Positive Women’s Network–USA. Today, she empowers women to engage in their health care.

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. 238. POSTMASTER: Send address changes to POZ, 212 West 35th Street, 8th Floor, New York, NY 10001. Copyright © 2019 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: (TAYLOR) ARI MICHELSON; (KAWATA) JONATHAN TIMMES; (MAGNIFYING GLASS AND GAVEL/BOOKS) ISTOCK

The science is clear: People who have an undetectable viral load can’t transmit HIV sexually. In addition to keeping people healthy, effective HIV treatment also means HIV prevention. Go to poz.com/undetectable for more.

FROM THE EDITOR

Better Together

Y E A R S

EDITOR-IN-CHIEF

ORIOL R. GUTIERREZ JR. MANAGING EDITOR

JENNIFER MORTON DEPUTY EDITOR

TRENT STRAUBE SENIOR EDITOR

KATE FERGUSON SCIENCE EDITOR

LIZ HIGHLEYMAN EDITOR-AT-LARGE

BENJAMIN RYAN COPY CHIEF

JOE MEJÍA ASSISTANT EDITOR

ALICIA GREEN ART DIRECTOR

DORIOT KIM ART PRODUCTION MANAGER

MICHAEL HALLIDAY EDITORIAL INTERN

CAROLINE TIEN CONTRIBUTING WRITERS

SHAWN DECKER, OLIVIA G. FORD, AUNDARAY GUESS, CASEY HALTER, DARYL HANNAH, MARK S. KING, ROD MCCULLOM, TIM MURPHY CONTRIBUTING ARTISTS

JOAN LOBIS BROWN, LIZ DEFRAIN, ARI MICHELSON, JONATHAN TIMMES, BILL WADMAN FOUNDER

SEAN STRUB LEGACY ADVISER

MEGAN STRUB ADVISORY BOARD

A. CORNELIUS BAKER, GUILLERMO CHACÓN, KATHIE HIERS, TIM HORN, PAUL KAWATA, NAINA KHANNA, DANIEL TIETZ, MITCHELL WARREN PRESS REQUESTS

NEWS@POZ.COM SUBSCRIPTIONS

HTTP://ORDER.POZ.COM UNITED STATES: 212-242-2163 SUBSCRIPTION@POZ.COM FEEDBACK

POZ, 212 WEST 35TH STREET, 8TH FLOOR, NEW YORK, NY 10001, OR EDITOR-IN-CHIEF@POZ.COM

SMART + STRONG PRESIDENT AND COO

IAN E. ANDERSON EDITORIAL DIRECTOR

ORIOL R. GUTIERREZ JR. EXECUTIVE EDITOR

BOB BARNETT CHIEF TECHNOLOGY OFFICER

CHRISTIAN EVANS VICE PRESIDENT, INTEGRATED SALES

DIANE ANDERSON (GUTIERREZ) JOAN LOBIS BROWN; (ILLUSTRATION) ISTOCK

INTEGRATED ADVERTISING MANAGER

JONATHAN GASKELL INTEGRATED ADVERTISING COORDINATORS

IVY PETERSON, CAROLINE RABIECKI INTEGRATED ADVERTISING INTERN

ALYSSA PRINCE SALES OFFICE

212-938-2051; SALES@POZ.COM

CDM PUBLISHING, LLC CEO

JEREMY GRAYZEL CONTROLLER

JOEL KAPLAN

POZ.COM/FACEBOOK

POZ.COM/TWITTER

POZ.COM/INSTAGRAM

WAS 22 YEARS OLD when I tested HIV positive in 1992. I was still figuring out my life, which seemed it would have a much shorter run than I had been expecting. I am part of the tail end of folks who didn’t have much reason to believe they would still be here—those who tested positive for the virus before we had effective treatment in 1996. A cure would be better, of course, but I’ll take being undetectable. Despite this good news, we’re seeing widespread symptoms among long-term survivors that mirror posttraumatic stress disorder. We may have overcome the immediate mortal threat, but at what price? “We don’t know what happens as people age with HIV,” says long-term survivor Jeff Taylor. He tested HIV positive in 1988. “It’s a huge unanswered question.” Our cover guy is working hard to find answers. Jeff is executive director of a coalition called the HIV+Aging Research Project— Palm Springs (HARP-PS). The group has identified three HIV research priorities: cognitive function and memory loss; depression and isolation; and inflammation and related comorbidities. Go to page 26 to read more about Jeff and HARP-PS. For this special issue on aging and HIV, in addition to Jeff and his colleagues, we spoke with Murray Penner and LaTrischa Miles. Murray tested HIV positive in 1986. LaTrischa was diagnosed in 1995. After years at NASTAD, the National Association of State and Territorial AIDS Directors, Murray is the new executive director of North America for Prevention Access Campaign, which originated the Undetectable Equals Untransmittable (U=U) message. Go to page 6 to read our Q&A with him. LaTrischa is one of 28 women who cofounded Positive Women’s Network–USA. Earlier this year, she became cochair of the organization. Her advocacy on behalf of women living with HIV is extensive. Go to

page 40 to read more about her. Living with HIV for decades takes its toll. However, being a long-term survivor doesn’t necessarily mean you have the virus. Many HIV-negative advocates are facing the same challenges with respect to posttraumatic stress as their counterparts living with HIV. Paul Kawata is a prime example. This year, he marks 30 years of leading NMAC, formerly the National Minority AIDS Council. Although Paul is HIV negative, as someone who bore witness to the early days of the epidemic, he has had to cope with his share of struggles. Go to page 38 to read our interview with him. In our continuing commemoration of our 25th anniversary, POZ is publishing chapters from our retrospective book, titled POZ at 25: Empowering the HIV Community Since 1994. In this issue, blogger and author Mark S. King details 25 years of celebrities from the pages of POZ. Our esteem for their HIV activism—from the red carpet to beyond—is a constant. Go to page 32 to read the excerpt.

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 SEPTEMBER 2019 POZ 3

Even if you are taking HIV meds and your virus is undetectable, you may still be experiencing HIV-associated wasting. HIV-associated wasting is defined by three key symptoms

Decreased energy •

As you lose weight, you may find yourself getting tired more quickly than you used to

•

Even simple, everyday tasks can be difficult for you to do

•

Loss of lean body mass •

Lean body mass (LBM) includes your muscles, organs, blood, bone, and water

•

You may feel tired more quickly or notice that you have less physical energy

You find that you don’t have enough energy to do the things you’ve always loved to do

Weight loss •

You’re losing weight, but you aren’t trying to

•

As your weight changes, your appearance may change

•

Friends, family, and coworkers may notice and express concern

Serostim® is the only FDA-approved treatment that is proven to help increase energy, lean body mass, and weight, 3 key symptoms of HIV-associated wasting. You must be on antiretroviral therapy while you are taking Serostim®

I gained...

... the energy to get back on two wheels

...the strength to focus on what’s important again

Serostim is a human growth hormone. In clinical trials, Serostim improved symptoms of HIV-associated wasting after 12 weeks. The most common side effects occurring in more than 10% of patients included swelling of the hands or feet, and joint pain or stiffness. Connect with us for tips on healthy living with HIV and to learn more about SEROSTIM.

Let’s get social

www.Facebook.com/Serostim

PZA508655A.pgs 03.05.2019 16:32

ESA

BRIEF SUMMARY OF IMPORTANT RISK INFORMATION FOR CONSUMERS What is SEROSTIM (somatropin) for injection? SEROSTIM is an injectable prescription medicine used for the treatment of HIV-positive patients with wasting or cachexia to increase lean body mass and body weight, and improve physical endurance. Treatment with antiretroviral therapy at the same time is necessary.

You should not take SEROSTIM if you have: • • • •

Other less common but serious side effects of SEROSTIM are:

A critical illness from surgery, serious injuries, or a severe breathing problem Cancer or undergoing treatment for cancer Eye problems caused by diabetes Allergies to growth hormone or other ingredients in SEROSTIM vials

• • • •

What should I tell my doctor before using SEROSTIM? • •

• •

•

If you have cancer or had cancer in the past. If you have diabetes, are at risk for getting diabetes, or have blood sugar levels that are higher than normal. New cases of type 2 diabetes have been reported in patients taking SEROSTIM. If you are allergic to growth hormone, benzyl alcohol, sucrose, phosphoric acid or sodium hydroxide. If you are taking any other medicines (both prescription or over the counter), vitamins, or supplements because these medicines may affect each other. Your doctor may need to adjust the dose of SEROSTIM or other medicines you are taking If you are nursing, pregnant, or plan to become pregnant. It is not known if SEROSTIM passes into your breast milk or could harm your unborn baby.

• •

These are not all of the possible side effects. Let your doctor know about any side effects you experience. Your doctor may prescribe a pain reliever or may decrease your dose of SEROSTIM to help manage some side effects. You are encouraged to report side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1-800-FDA-1088.

How should you administer SEROSTIM? Patients and caregivers should be trained by a healthcare professional on how to mix and inject SEROSTIM prior to use. Never share SEROSTIM with another person, even if the needle is changed. Injection sites can include arms, legs, abdomen and should be changed daily. Avoid injecting SEROSTIM in areas that are sore or bruised.

What are the most common side effects of SEROSTIM reported in clinical trials in patients treated for HIVassociated wasting or cachexia? •

• • •

Bone, muscle, and joint pain or stiffness Swelling, especially in the hands or feet or around the eyes Tingling, numbness and pain in the fingers, thumb or wrist Unusual skin sensations Breast enlargement in men Nausea Extreme tiredness

High blood sugar (hyperglycemia/diabetes) which can include symptoms of increased thirst and urination, tiredness, or trouble concentrating Headaches, changes in vision, nausea or vomiting, which requires immediate medical attention Serious allergic reactions that require immediate medical attention Pain and tenderness in the abdomen

Please see Full Prescribing Information available at www.serostim.com for a complete list of Serostim risk information

Support through every step of treatment •

•

A dedicated case manager who will manage the reimbursement process, assist with paperwork, and be the single point of contact for you and your care team Payment assistance programs, which, if you are eligible, may help cover out-of-pocket costs related to your Serostim® prescription

•

In-home or in-office injection training to teach you how to take Serostim®

•

24/7 phone support to answer all of your Serostim® product-related questions

Ready to take advantage of the AXIS Center®? If you’ve been prescribed Serostim®, then call the AXIS Center® at 1-877-714-AXIS (2947) and start getting treatment support today.

PZA508655B.pgs 03.05.2019 16:32

ESA

POZ Q+A

BY ORIOL R. GUTIERREZ JR.

U=U campaigns from the New York State Department of Health (top) and the Long Island Crisis Center Pride for Youth

U=U 2.0

URR AY PENNER IS THE NEW EXECUTIV E DIRECTOR OF North America for Prevention Access Campaign (PAC), which originated the Undetectable Equals Untransmittable (U=U) message. U=U refers to the fact that people living with HIV on effective treatment cannot sexually transmit the virus. Since the launch of U=U, a groundswell of research has confirmed that having an undetectable viral load renders people incapable of transmitting HIV to their sexual partners. Over 800 community partners from nearly 100 countries have endorsed U=U. Penner was the executive director of NASTAD (National Association of State and Territorial AIDS Directors) from 2015 to 2018. Before that, he was NASTAD’s deputy executive director from 2001 to 2015. Penner tested HIV positive in 1986.

The role of PAC executive director of North America is new. Why was it created?

One of the reasons is that we have grown so fast. Founding PAC executive director Bruce Richman has done an amazing job, but as the U=U message continued to grow, especially internationally, we observed a need to focus more in the United States. We definitely have good support nationwide, but skepticism and concerns about our message still remain in some places. We want to make sure that we pull together support across the country so that we can have an effective U=U movement. I’ll give you a good example of what we think is lacking in the United States. Take Scotland, for instance. During their most recent Pride celebration, they had U=U banners at the very front of their parade with lots of people marching with the banners. U=U was front and center at that event. It’s been harder to get that same level of support in the United States. We concluded that someone needed to focus exclusively

6 POZ SEPTEMBER 2019 poz.com

on making that happen. We need to galvanize U.S. support for the U=U message. My new role also includes Canada. The Canadian government is supportive of U=U, but certainly there remains work to do in Canada. I’ll also be sharing tasks with Bruce here and around the world. There is plenty for us all to do! How can U.S. HIV groups be proactive?

In my experience working at NASTAD, I have found that health departments play a key role in working with both AIDS service organizations (ASOs) and community-based organizations (CBOs). That experience is one of the reasons this role is a good fit for me. In many cases, health departments are the primary HIV funders, through the Ryan White program in particular. Where we have seen good success with ASOs is when the local health departments get behind U=U by including it in their programming. I’ll give you an example. In Washington, DC, the health department has released its request for proposals for funding

COURTESY OF NYS DEPT OF HEALTH AND LI CRISIS CENTER PRIDE FOR YOUTH

Prevention Access Campaign builds on its success with a new executive director of North America.

through Ryan White. It included a component that requires ASOs to put U=U into programming to make sure everyone is aware of its benefits. U=U can motivate people to get onto treatment and keep them adherent to their medications to achieve and maintain an undetectable viral load. However, U=U can’t do any of that if people living with HIV aren’t even aware of it. Networking can also be effective— for instance, getting networks within a state to come together for trainings by health departments for case managers. We don’t see that happening everywhere, so it’s the responsibility of both health departments and ASOs to unite. Creating and distributing U=U materials is key. It’s increasingly common to see PrEP [pre-exposure prophylaxis] posters and flyers when you walk into a clinic, but it’s still rare to see those kinds of materials for U=U. You can make T-shirts, stickers and more. U=U needs to be more prominent.

COURTESY OF MURRAY PENNER

Are there other leverage points?

Not all ASOs or CBOs provide medical services. However, instituting targets for viral suppression rates is a tool we’ve seen used in those that do. Implementing performance measures such as that is one point of leverage. Another one is training and technical assistance for providers. One of the challenges we keep hearing is that doctors, nurses, social workers and others do not share the U=U message. In particular, we most often hear that doctors don’t feel comfortable talking about U=U. Yet another point is social media, which is where we are seeing a lot of success internationally. Both individuals and organizations outside the United States are getting the word out through social media. We do see individuals here use social media to promote U=U, but we need to see more U.S. groups do so. A point of success worldwide, including the United States, is using Pride celebrations to spread the message. We’ve seen many organizations use Pride as a reason to promote both U=U and PrEP. How can PrEP and U=U work together?

There are some people who think we

need to put all our energy into PrEP and not into U=U, or vice versa. I believe that the two need to go hand in hand. The modeling we’ve seen from the U.S. Centers for Disease Control and Prevention, for instance, shows that the greatest effect on the epidemic is if we both scale up treatment to get people virally suppressed and scale up PrEP. We lose lots of opportunities when we talk only about PrEP and at the same time don’t talk about the benefits of treatment. Presenting both PrEP and U=U side by side as options to keep people healthy can help end HIV stigma. I don’t see one without the other, particularly when you’re talking about HIV testing. Knowing your status is vital so that you can decide which direction to take in terms of taking care of yourself. To

Murray Penner

Apart from the personal aspects of U=U, we need to better address policies by challenging beliefs. For example, we hear that some providers worry about adherence. They say that if people hear the U=U message that folks will stop taking their meds regularly when they become undetectable. That concern is being reflected in the policy of some providers not sharing U=U. How do you see your new role at PAC?

My time at NASTAD was wonderful. However, after many years there I began wanting more grassroots engagement. I also battled prostate cancer. The combination led me to move on. While at NASTAD, I was one of the original signers of the U=U consensus statement. I felt U=U had tremendous

“We need to galvanize U.S. support for the U=U message.”

stay healthy, you can use antiretrovirals to either treat the virus or prevent it. What are some next steps for U=U?

For starters, emphasizing that U=U is a powerful reason to argue for access to treatment. Of course, the primary task of treatment is to suppress the virus to keep people healthy. That reason alone, however, has not guaranteed access. We want U=U to help increase access. We also need to increase knowledge of U=U, as well as PrEP, among certain populations. Lack of information about U=U exists along the same lines as the inequities that exist when it comes to access to treatment. From young Black gay men to transgender women to others, we have a lot of work to do. Everyone should be benefiting from U=U.

potential to motivate people to get into treatment and to achieve undetectable status but more so to end HIV stigma. U=U is something I was already passionate about, so when Bruce and I first started talking about this new role at PAC, everything lit up for me in terms of matching opportunities with my abilities. It still feels overwhelming. You’re never going to have a job that is stressfree, but it has an energy that excites me. I’m a relationship builder. I work to figure out how to achieve common goals and consensus. You need a heavy hand in activism, but it also helps to have a way of seeing through differences. U=U is an opportunity to bring people together in ways that we haven’t necessarily seen in the HIV movement. U=U can help us all be more united. Q

poz.com SEPTEMBER 2019 POZ 7

YOU MATTER AND SO DOES YOUR HEALTH Thatâ&#x20AC;&#x2122;s why starting and staying on HIV-1 treatment is so important. WHAT IS DESCOVYÂŽ? 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 QH UGZWCN EQPVCEV YKVJ DQF[ Ć&#x192;WKFU 0GXGT TGWUG QT UJCTG PGGFNGU QT QVJGT KVGOU VJCV JCXG DQF[ Ć&#x192;WKFU QP VJGO

IMPORTANT SAFETY INFORMATION What is the most important information I should know about DESCOVY? DESCOVY may cause serious side effects: â&#x20AC;˘ 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 YKVJQWV Ć&#x201A;TUV VCNMKPI VQ [QWT JGCNVJECTG RTQXKFGT CU they will need to monitor your health. What are the other possible side effects of DESCOVY? Serious side effects of DESCOVY may also include: â&#x20AC;˘ Changes in your immune system. Your immune U[UVGO OC[ IGV UVTQPIGT CPF DGIKP VQ Ć&#x201A;IJV KPHGEVKQPU Tell your healthcare provider if you have any new symptoms after you start taking DESCOVY. â&#x20AC;˘ 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. â&#x20AC;˘ 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. â&#x20AC;˘ 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 â&#x20AC;&#x153;tea-coloredâ&#x20AC;? 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 donâ&#x20AC;&#x2122;t go away. What should I tell my healthcare provider before taking DESCOVY? â&#x20AC;˘ 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. â&#x20AC;˘ 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. â&#x20AC;˘ 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. â&#x20AC;˘ 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 DESCOVYÂŽ is right for you.

PZA508645A.pgs 03.05.2019 16:00

ESA

PZA508645B.pgs 03.05.2019 16:00

ESA

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

PZA508645C.pgs 03.05.2019 16:00

ESA

POZ PLANET

BY TRENT STRAUBE

POZ AT 25 A look at September issues from the POZ archives

2004

1999

2009

2014

1994

1. AUGUST/

SEPTEMBER 1994 COVER: A Q&A with HIV activist Pedro Zamora of MTV’s The Real World. INSIDE: A portfolio of illustrations by fashion artist Antonio López; an interview with comedian and ally Joan Rivers; a feature on the use of anabolic steroids among people living with HIV. PLUS: POZ compiles a list of the 50 most influential AIDS policymakers.

2. SEPTEMBER 1999

COVER: NYPD officer Steve Yurcik received support from his fellow officers after he disclosed he has HIV. INSIDE: Immigrants with HIV who are detained by the Immigration and Naturalization Service may face unpredictable health care. PLUS: An interview with Where the Wild Things Are author Maurice Sendak, whose drawings have been turned into a wallsized mural at GMHC in New York City.

3. SEPTEMBER 2004 COVER: Exploring the phenomenon known as “the down low.” INSIDE: The AIDS Treatment Coalition is making pharma and the feds listen to your treatment needs; a step-by-step guide on how a pill gets to market. PLUS: By cuddling kiddies, Alicia Keys, Oprah and other bigname celebs are putting a human face on AIDS in Africa.

4. SEPTEMBER 2009 COVER: Luz de Jesus Roman is a Latina mom living with HIV who invites POZ along on her journey of having an HIV-negative baby girl. INSIDE: Keeping AIDS at bay in Cuba; the media should pay attention to Latinos living with HIV; Our Bodies, Ourselves devotes an entire chapter to HIV/AIDS. PLUS: A book of first-person narratives of Black gay men in the South is “serving tea.”

5. SEPTEMBER 2014

COVER: Julie Lewis (mom of DJ-producer Ryan Lewis) and the 30/30 Project seek to build affordable health centers for those most in need. INSIDE: A new musical about disco legend Sylvester; “Start Talking. Stop HIV” is the CDC’s latest HIV prevention campaign. PLUS: Activist Tez Anderson helps create the annual HIV/AIDS Long-Term Survivors Awareness Day (#HLTSAD).

Go to POZ.com/25 for more 25th anniversary coverage! poz.com SEPTEMBER 2019 POZ 11

POZ PLANET BY TRENT STRAUBE

STORIES OF RESILIENCE Two HIV researchers discuss their recent books on gay men and HIV-positive women. Perry N. Halkitis, PhD, MPH, is the dean of the School of Public Health at Rutgers University. For his latest book, Out in Time: The Public Lives of Gay Men from Stonewall to the Queer Generation, he interviewed 15 gay men spanning three different groups he labels as the Stonewall Generation (those who came out during the 1950s to 1970s), the AIDS Generation (the 1980s to 1990s) and the Queer Generation (2000s to 2010s). Read our full interview on POZ.com.

How do the generations differ? Each is defined by different challenges. For the Stonewall Generation, the struggle was to live openly and without the fear of harassment, persecution and criminalization in an era when being gay was diagnosed as a psychopathology. For the AIDS Generation, the goal was to survive and thrive, especially before 1996 [the year effective HIV treatment became available]. For the Queer Generation, there are two main struggles—the challenge to live full intersectional lives where gay identity is celebrated alongside and in connection with race, ethnicity, culture and gender; the other challenge is coming of age in the post–financial-crisis world. The economic conditions of these young men are unlikely to be as From left: Perry N. Halkitis of Rutgers prosperous as those who came of University, who spoke age before them. It is important to with gay men; Celeste note that these burdens are cumuWatkins-Hayes of lative across time. The younger Northwestern men continue to face harassment, University, who AIDS and other challenges that interviewed women defined the lives of the Stonewall living with HIV and AIDS generations. Do coming out and being proud affect a person’s health? When you are able to live your truth—not subjugating who you are—and experience pride in who you are, then your physical, social and emotional health simply improve. Pride is embodied in the resilience that many gay men have developed, which is as powerful, if not more powerful, than condoms and PrEP [Truvada as pre-exposure prophylaxis] in preventing seroconversion and as important in helping HIV-positive gay men live their own beautiful lives with health and determination.

Celeste Watkins-Hayes, PhD, is a professor of sociology and African-American studies and a faculty fellow at the Institute for Policy Research at Northwestern University. For her latest book, Remaking a Life: How Women Living With HIV/AIDS Confront Inequality, she interviewed over 100 women living with the virus in the Chicago area. Read the full interview on POZ.com.

12 POZ SEPTEMBER 2019 poz.com

What is the topline takeaway from your book? We discount the lives and experiences of marginalized populations at our collective peril. The underlying theme is the way in which people in the minority—those marginalized on the basis of sexuality, race, class, gender identity and other statuses— have created a movement and a tangible support structure to save and improve not only their own lives but also the lives of those around them. The HIV movement has led to important medical discoveries, changed the face of patient-physician interactions and generated models for what holistic wraparound care can look like. In a moment when those on the margins are attacked and discounted, the danger of counting people out and devaluing what they can contribute cannot be more relevant. Did recurring themes unite these stories of transformation? By interviewing women living with HIV for over a decade, I was able to illustrate how women move from what I call “dying from” to “living with” to “thriving despite” personal traumas and systemic injuries of inequality, including but not limited to HIV. I heard many accounts of distress and struggle but also

(HALKITIS) COURTESY OF RAYMOND CLINKSCALE

What is the topline takeaway from your book? It’s gotten better, but it’s still not great! More than ever, in this political era, we need to be vigilant or else our rights will be slowly eroded.

(WATKINS-HAYES) COURTESY OF CELESTE WATKINS-HAYES (BAKER) COURTESY OF MAXWELL PHOTOGRAPHY

PRIDE & HIV

stories of transformation. The connective threads were women’s resilience as well as the collective strength of the HIV community. Perhaps one of the most important but underrecognized outcomes of HIV/AIDS mobilization is the emergence and sustainability of an extensive HIV safety net that offers access to health care, modest economic assistance, extensive social support and a path to political and civic engagement. For women able to gain access to those resources and truly leverage them, it proved to be transformative. I also talked with more economically and socially privileged women, for whom the HIV diagnosis was a stunning setback that contradicted the relatively smooth trajectory they believed they were following. For them, thriving despite the virus was less about getting access to services than about finding ways to confront the stigma and shame.

The rainbow flag was born June 25, 1978. Gilbert Baker, then 27 years old, created the iconic flag—actually a pair of them, each 30 by 60 feet!—to fly at San Francisco’s United Nations Plaza as part of the Gay Freedom Day Parade. After finishing the sewing the night before, Baker and a friend stripped naked and frolicked in the fabric to imbue it with raw gay energy. The next morning, they celebrated with a snort of coke. What can you say? It was the 1970s, in hippie-dippie San Francisco. The fact that such details come across as celebratory and historic instead of sordid and hedonistic says a lot about Baker and his memoir, Rainbow Warrior: My Life in Color. And to be fair, the book is rather chaste regarding sex and drugs, but it sure delivers the money shots when it comes to behind-the-scenes political infighting, personality clashes and the eternal battle between grassroots activists and corporate sponsors—and how all that negativity can be overcome for the greater good. But back to June 1978 and the birth of the universal symbol of the LGBTQ community. Only three years later, in June 1981, the Morbidity and Mortality Weekly Report published the first official account of what would become known as AIDS. So the epidemic plays a big role in the history of the rainbow flag and its creator, who was HIV negative and died in 2017 at age 65. Much of the memoir focuses on the major drama behind Baker’s Gilbert Baker, effort to create a mile-long rainbow who died in flag for Stonewall 25, the 1994 New 2017, was York Pride March. Read about it and nicknamed the you’ll gain a fresh appreciation for Gay Betsy our allies and this rainbow creation. Ross.

Did any of your findings surprise you? What may be surprising to some are the ways in which cisgender and transgender women of color have been unsung leaders and foot soldiers in HIV/AIDS activism and advocacy work. They have long been in the fight and have contributed a great deal.

poz.com SEPTEMBER 2019 POZ 13

VOICES

BLOGS AND OPINIONS FROM POZ.COM

JUST ONE In his blog post titled “On Starting My First One-a-Day HIV Regimen,” POZ contributing writer Shawn Decker shares his journey from being a kid with no real treatment options to now. Below is an edited excerpt.

recently started my ﬁrst ever once-aday HIV drug regimen. This isn’t an endorsement. I just wanted to discuss this in the context of the long road that brought me here. Being diagnosed at age 11, in 1987, was tough. Even a heaping bowl of Fruity Pebbles couldn’t sugarcoat it. After AZT was approved, my doctor was hoping that I’d try it. My mom asked me if I wanted to. I asked her if it would cure me. She truthfully said that no, it wouldn’t, so I said no. I didn’t want to take anything that only guaranteed more needles going into my arm, and I hated the lab work. My T cells ﬂuctuated a bit but always stayed right around that danger zone. If I got a cold, it would last longer than if my big brother got it. Strep throat visited at least once a year for a few years. After I graduated high school, I noticed a dip in my energy. A couple of years after my graduation is when real HIV treatment options were available. It was 1996, the same year I decided to go public with my status. Once again, my doctor implored me to consider taking HIV drugs. But I was in a different headspace, way more worried about updating my website or turning in my latest “Positoid”

14 POZ SEPTEMBER 2019 poz.com

column for POZ. Even after a really nasty bronchial infection that lingered for close to two months, I didn’t consider HIV medications. Perhaps my resistance stemmed from the fact that treatment for hemophilia had given me HIV—as well as hepatitis B and C. Things took a turn for the worse in 1999. I got the flu or something akin to it and lost about 30 pounds over the course of three months. My borderline T cells were plummeting. My attitude on the lab work had shifted. For a couple of years, I was running a contest for my friends in the POZ office: The Lab Test Contest. Whoever guessed closest to my actual T-cell count would get a signed (by me!) photo of me with a random celebrity I had met through the years. As my health was failing and my longtime doctor was retiring, I finally agreed to take something: Marinol. Synthetic THC. I’d never smoked pot. My appetite increased dramatically. And yes, I got totally high too. However, my T cells continued to crash. By the time I met with my new doctor, he didn’t bother asking if I wanted to take HIV drugs—he asked when we were starting.

I was pretty scared when I started my first combo. One med was six pills a day, and that was just one of three drugs. After just weeks on treatment, my viral load decreased quickly. The increase in T cells was more gradual. It turned out it was the right time for me to start—even though it was a little late—because I was finally ready for the commitment of taking the pills every day. Side effects from my first combo were pretty rough, with nausea and diarrhea. After a few years on the second combination, I noticed the mental fog. I then started a week-on/week-off strategy. Seven days on HIV meds, seven days off. The next switch was from week-on/week-off to fewer drugs but daily. My viral load remained undetectable for years. One consistent side effect of my HIV meds has been elevated cholesterol levels. The one-a-day pill for HIV that I just started supposedly will not have a negative impact on my cholesterol. I sure hope that’s the case. All in all, though, I feel so fortunate. If this doesn’t work to reduce my cholesterol, there are other options out there. Q

NO THANKS In his blog post titled “Giving Thanks?” Andrew Spieldenner, PhD, chair of the U.S. People Living with HIV Caucus, explores the concept of gratitude in the HIV field. Below is an edited excerpt.

BOTH IMAGES: ISTOCK

friend recalled a recent encounter with a leader in the HIV ﬁeld. The leader asked why the community of people living with HIV did not thank him for all his work. He was hurt and wanted answers. He is HIV negative. We have been asked by “allies” throughout all our movements to be grateful to people who are not directly implicated in discrimination. When doing race-based organizing, I’ve heard white people expect to be thanked for standing against racism; men expect public recognition for standing up for women, for declaring themselves feminists or even for just retweeting a #MeToo statement; and heterosexuals expect to be recognized for how cool they are with LGBT people. It’s quite odd to be asked to say thank you when racism, sexism, homophobia and transphobia affect all of us. Our privileges are shaped by other people’s oppression. I am a gay man of color living with HIV. I have been challenged by substance use and other disabilities. I am intimately familiar with the ways that sexism, homophobia, racism, ableism and normativity work. I do not ﬁt in. I am the target for many of the slings

and arrows of this society. No one has ever thanked me for being discriminated against. So when I hear people who consider themselves allies expecting to be thanked for their work, I wonder about their understanding of the world. Some of them want to be recognized for remaining HIV negative. Some want to be thanked for doing their jobs. They get paid to work in a ﬁeld that was developed based on our needs. We became vulnerable to HIV based on institutional, social and personal contexts—we do not necessarily get paid large salaries based on these vulnerabilities. The HIV movement works best when we center people living with HIV. We have always had allies. In the opening of the remarkable ACT UP Paris ﬁlm BPM, the at-large member explains to the prospective new members that they will accept being labeled HIV positive, that they will not claim to be HIV negative in public, that they must stand together with people living with HIV, without hesitation. It is in this spirit that I question people who want to be thanked. We stand together—not because we want recognition—but because it is the right thing to do.

HIV is a social justice issue. I expect people who care about these issues to stand up alongside us in our HIV work. I am thankful that we have an HIV community. I am grateful each time we get to come together. I understand that our convening requires the efforts of many people—some who live with HIV and some who do not. Regardless, I believe in the work that happens when a group of people living with HIV come together: the new ways we learn to love ourselves as well as stand up for ourselves and one another. I would caution those who expect to be thanked for doing their job or for being involved in HIV when they do not live with it. I would ask them to consider what they’re grateful for. We live in a world that still criminalizes HIV, where many key populations (e.g., sex workers, people of trans experience, people who use drugs, gay and bisexual men and migrants) are still criminalized and where there is less political goodwill to address HIV than there was in the 1990s. As people tout “the end of AIDS,” I recognize that we—the community of people living with HIV—will still exist, and we will still live under the same systems that have marginalized us. Q

poz.com SEPTEMBER 2019 POZ 15

10th Annual 10th Annual POZ POZ 100 100 The 2019 POZ 100 will celebrate trans trans advocates advocates across the country who are making a difference in the fight against HIV/AIDS. This yearâ&#x20AC;&#x2122;s list will honor transgender, gender-nonconforming and nonbinary individuals who are living with HIV or who are HIV negative. Established in 2010, the POZ 100 recognizes individuals and organizations committed to ending the HIV/AIDS epidemic. For more information and to submit a nomination (self-nominations are welcome), go to POZ.com/nominate POZ.com/nominate.

Early Deadline: Early Deadline: August August 24 24

P07-19_POZ_100_ad_full_page_HY.indd 25

Don Sub â&#x20AC;&#x2122;t delay ! m nom it you r inat i o 201 for the n 9P O tod Z 100 ay!

6/5/19 3:41 PM POZ17638-00_FPad.pgs 06.05.2019 15:55

EVERYDAY

BY JENNIFER MORTON

September 18 6 19 THE AIDS (Artists Involved with Death & Survival) SHOW premieres at Theatre Rhinoceros in San Francisco. The play is the subject of a 1986 documentary film of the same name. (1984)

SWEDEN announces it’s the first country to meet the United Nations’ 90-90-90 goal (90% of people with HIV know their status, 90% of them are on sustained treatment and 90% of those people have achieved viral suppression). (2016)

Positively Aware launches the antistigma campaign “A DAY WITH HIV,” which encourages people living with and affected by HIV to photograph a moment of their day and share it on social media. (2010)

Broadway composer and lyricist MICHAEL FRIEDMAN—known for his work on the musical Bloody, Bloody Andrew Jackson—dies at age 41. His death is a reminder to many that people continue to die of AIDS-related illnesses. (2017)

Nick Rhoades, who in May was sentenced in Iowa to 25 YEARS IN PRISON FOR FAILING TO DISCLOSE HIS HIV STATUS to a sexual partner who didn’t contract HIV, has his sentence reduced to five years’ probation without jail time. (2009)

12 (FLAG, CONDOM AND GAVEL/MONEY) ISTOCK

NATIONAL HIV/AIDS AND AGING AWARENESS DAY

The Department of Justice announces A $715,000 SETTLEMENT in favor of a boy who was denied admission to the Milton Hershey School because he is living with HIV. (2012)

POZ editor-inchief REGAN HOFMANN releases her memoir, I Have Something to Tell You. (2009)

LET’S KICK ASS (AIDS Survivor Syndrome), a grassroots movement empowering long-term survivors, is founded. (2013)

The Food and Drug Administration rules that the labeling of LATEX CONDOMS MUST CONTAIN AN EXPIRATION DATE. (1997)

NATIONAL GAY MEN’S HIV/AIDS AWARENESS DAY

Representatives Phillip Burton (D–Calif.) and Ted Weiss (D–N.Y.) introduce the first legislation to ALLOCATE FUNDING FOR AIDS RESEARCH. The resolution dies in committee, and Congress Burton does not approve the first Weiss dedicated funding for AIDS research and treatment until July 1983. (1982)

The Centers for Disease Control and Prevention launches the first AIDSrelated public service announcements, “AMERICA RESPONDS TO AIDS.” The campaign encourages a dialogue about HIV and AIDS and kicks off the newly designated AIDS Awareness Month in October. (1987)

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

poz.com SEPTEMBER 2019 POZ 17

CARE AND TREATMENT BY BENJAMIN RYAN

RAPID TREATMENT WORKS A high proportion of people who rapidly start Symtuza (darunavir/cobicistat/tenofovir alafenamide/emtricitabine) following their HIV diagnosis have an undetectable viral load a year later. Janssen’s Symtuza was approved in July 2018 for those starting antiretroviral treatment for the first time and for certain people switching from a different regimen who have a fully suppressed viral load. Researchers enrolled 109 participants within 14 days of their HIV diagnosis and swiftly started them on Symtuza, even before the results of their initial round of viral resistance or other laboratory tests were available. At the 48-week mark, 92 of the 96 participants with complete data (96%) had a fully suppressed viral load, and all of them had a viral load below 200. “These clinical trial data provide more evidence that rapid antiretroviral treatment initiation is feasible and effective,” says Susa Coffey, MD, a professor of medicine at the University of California, San Francisco, who helps head up the city’s aggressive push to rapidly treat HIV following diagnosis. Coffey, who was not involved in this study, continues: “The findings match what we have seen in San Francisco through the Getting to Zero initiative, using various preselected simple and potent antiretroviral regimens: Immediate treatment is desired by people who are newly diagnosed with HIV and can result in very high rates of virologic suppression.”

Women’s Detectable HIV Risk Beset with numerous life challenges that may compromise their adherence to antiretrovirals, many women living with HIV are at substantial long-term risk of developing a detectable viral load. Researchers from the long-running Women’s Interagency HIV Study analyzed data on nearly 2,000 U.S. women with the virus who made at least five study visits, scheduled every six months, between 1994 and 2017. Based on whether the women had a viral load below 200 or at least 200 at any one of their visits, the researchers’ mathematical analysis led them to predict that 29% of the women had a low probability of developing a viral load of 200 or above, while 39% had an intermediate probability and 32% had a high probability of doing so. By the study period’s end, the average

20 POZ SEPTEMBER 2019 poz.com

cumulative time spent with a fully suppressed viral load was 19 years in the low probability group, 12 years in the intermediate group and 6 years in the high probability group. After adjusting the data to account

for various differences between the women, the researchers found that factors associated with a high probability of having a viral load of 200 or above included being African American or Latina compared with being white, having more symptoms of depression, using drugs, having unstable housing and having a lower CD4 count. “There are clearly social, cultural and biologic elements that influence a woman’s experience with HIV,” says the study’s first author, Seble G. Kassaye, MD, MS, an associate professor of medicine at Georgetown University Medical Center. “For example, women may have responsibilities outside of their own health, [such as being] caretakers within their families and communities, which may present a challenge for women even under the best-case scenario.”

Hep C Treatment Works Really Well

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

LONG-ACTING HIV MEDS Long-acting injectable antiretroviral (ARV) therapy appears poised to finally become a reality for people with HIV by the end of 2019. In April, ViiV Healthcare applied to the Food and Drug Administration for approval of a long-acting injectable formulation of Janssen’s rilpivirine (sold in daily pill form as Edurant) and ViiV’s cabotegravir. The regimen is injected into the muscle every four weeks and requires a clinic visit. Two late-stage trials including more than 1,100 HIV-positive participants found that 48 weeks of the long-acting regimen suppressed HIV as effectively as a standard daily oral triple-ARV combination in people starting treatment for the virus for the first time or switching from a standard oral regimen. Meanwhile, the National Institutes of Health (NIH) has launched a trial of the injectable regimen for those who have not adhered well to daily oral treatment. The study will randomize half of an expected 350 such individuals to receive the injectable regimen; after one year, it will compare their rate of viral suppression with that of people who were randomized to stay on daily oral treatment. “There are a considerable number of people who are on antiretrovirals and are adequately suppressing their viremia who do not want to have to take a pill every single day for a number of reasons,” says Anthony S. Fauci, MD, director of the National Institute of Allergy and Infectious Diseases, a division of the NIH. “They don’t like to be reminded every single day of the year that if they don’t take this pill, their virus is going to come back. That is really a very strong psychological issue. Having trouble taking a pill every day might be an actual manifestation of this issue.”

More research has added to the evidence that direct-acting antiviral (DAA) treatment for hepatitis C virus (HCV) has a high cure rate among people with HCV/HIV coinfection. Researchers analyzed previously recorded data from 784 people with HIV who received DAA treatment for HCV between 2014 and 2017 in Spain, Italy and the United States. They found that 93% were cured of HCV, known as a sustained virologic response, while 7% still had the virus. Among the 7% who were not cured, known as treatment failure, 51% stopped DAA treatment early, died or were lost to follow-up. Another 47% experienced a rebound of their hep C after finishing treatment, known as virologic failure. One person who was cured later contracted the virus again. Current drug users, people with mental health problems and those in both categories were a respective 2.6-fold, 2.9-fold and 7.5-fold more likely to experience treatment failure. Ongoing drug use and advanced liver fibrosis were associated with a respective 2.8-fold and 2.3-fold increased risk for virologic failure. “Even in the era of highly efficacious DAAs, some [people with HIV and HCV coinfection], particularly those with advanced liver fibrosis, ongoing mental illness and illicit substance use, will benefit from additional support while on DAA therapy to prevent lack of adherence or premature DAA discontinuation that will result in HCV treatment failure,” says the study’s lead author, Edward Cachay, MD, of the University of California, San Diego.

Introducing the new and improved

POZ.com

WEBSITE FEATURES INCLUDE: • Responsive design optimized for smartphones and tablets • Faster site for quicker load times • Redesigned for easier readability and navigation • Improved search function

RESEARCH NOTES

ALL IMAGES: ISTOCK

BY BENJAMIN RYAN

PREVENTION

TREATMENT

CURE

CONCERNS

Zero Transmissions

Long-Acting Antibody

Trial Transmission

Women’s Disparities

The final results from the PARTNER2 trial, the largest study to analyze HIV treatment as prevention among men who have sex with men, offered a trove of new evidence indicating that people with HIV who have an undetectable viral load thanks to antiretroviral treatment do not transmit the virus. In fact, the study’s lead author, Alison Rodger, MD, of University College London, called the risk of transmission “zero” in this context. There were no transmissions within 782 mixed-HIV-status European gay male couples who collectively had condomless sex some 76,000 times. This new data set—together with the findings of two other studies, called HPTN 052 and Opposites Attract, as well as an earlier phase of the PARTNER study—have collectively provided a massive amount of evidence regarding transmission risk within both male-male and male-female mixed-HIVstatus couples. All this research firmly supports the global consensus that undetectable equals untransmittable, or U=U.

CytoDyn’s cloned antibody treatment PRO 140 (leronlimab), given as a weekly intravenous infusion, has received fast-track status from the Food and Drug Administration (FDA) for use in combination with daily oral antiretrovirals (ARVs) for people with drug-resistant HIV. The FDA decision should come by late 2019 or early 2020. PRO 140, which works by blocking the CCR5 coreceptor on the surface of CD4 cells to which most HIV attaches to infect the cells, has been tested in nine clinical trials that together included more than 700 people. According to CytoDyn, these studies have found that PRO 140 has a potent effect on HIV and produces fewer side effects than standard ARV treatment; the most common one is a mild or moderate reaction at the site of the injection. CytoDyn is also planning a Phase III clinical trial of people with a fully suppressed viral load on antiretrovirals, who will switch to treatment with PRO 140 alone.

French researchers have reported a case of a 59-yearold HIV-positive participant in a therapeutic vaccine trial who transmitted the virus to his monogamous female partner during a planned interruption of his antiretroviral (ARV) treatment. The trial randomized participants to receive injections of a pair of experimental vaccines or a placebo over a 24-week period. At the study’s outset, participants were all on ARVs, had a fully suppressed viral load for at least 18 months and had a CD4 count above 600. Their ARV treatment was interrupted between week 36 and 48 of the trial, during which time they received monitoring and safer-sex counseling every two weeks. The man, whom investigators appraised as quite knowledgeable about HIV, experienced chronic depression—for which he declined treatment—and also had poorly managed diabetes. After one month off ARVs, he developed a viral load of 2,000, a figure that ultimately peaked at 16,000. During this time, his partner seroconverted.

According to the Centers for Disease Control and Prevention, the disparity between Black and white women in the rate of new HIV infections is so vast that if Black women had the same lower acquisition rate as their white counterparts, there would be some 3,900 fewer new cases of the virus among them annually. That figure represents 1 in 10 of the estimated 38,700 new infections in the United States in 2016, when an estimated 60% of new infections among women were in Black women. Estimated new infections in this group declined steadily between 2010 and 2014, from 5,300 to 4,000 new cases. But then, estimated new infections rose to 4,100 in 2015 and to 4,200 in 2016. Between 2010 and 2016, the number of estimated new infections among white women remained stable at around 1,400. In 2016, the new infection rate per 100,000 Black women was 24.4 new cases, a rate 15 times higher than that of white women.

poz.com SEPTEMBER 2019 POZ 25

JAMEY GUY

Older & Wiser HOW HIV LONG-TERM SURVIVORS CONTRIBUTE TO A BETTER FUTURE FOR EVERYONE

ARI MICHELSON

BY MATT SHARP AND TRENT STRAUBE

THE ALARM GOES OFF AT 5:30 A.M. JEFF TAYLOR, 57, ROLLS over to turn it off and finds himself staring into the face of Ivan, his rescue greyhound. Taylor realizes he has just enough time to feed Ivan and sip some green tea before his first conference call. As a full-time treatment advocate living in Palm Springs, California, Taylor has served over three decades as a community liaison for numerous research organizations and the Food and Drug Administration, HIV/AIDS groups, scientists, doctors and people living with the virus. In other words, he brings together diverse stakeholders so they can better tackle the latest HIV challenges. poz.com SEPTEMBER 2019 POZ 27

Now that there’s effective treatment—at least for those who can access health care—what concerns do people with HIV face today, and how can a bunch of early morning conference calls possibly address them? “Everyone is starting to recognize that we have what I call a ‘silver tsunami’ of aging HIVers who are going to overwhelm our care and service systems as the first generation to survive AIDS enters their 50s, 60s and beyond,” Taylor says. Indeed, as of 2015, nearly half of people with diagnosed HIV in the United States are 50 or older. By next year, the figure is projected to be more than 70%. “But there’s very little in place to deal with this,” Taylor warns, noting that most services for seniors don’t kick in until age 65 but that people growing older with HIV are experiencing age-related health issues about a decade earlier than their HIV-negative counterparts. “We don’t have the infrastructure in place to address this,” Taylor says. “Most HIV research studies arbitrarily exclude anyone over 65—a relic from the old days when nobody was expected to live that long—so there’s a lot of catching up to do. We don’t know what happens as people age with HIV. It’s a huge unanswered question.” And who better to answer this question than long-term survivors themselves? Since research often doubles as an incubator for policy, it remains critical that people aging with HIV are at the table to offer advice from the get-go. At the prodding of advocates like Taylor, the research community is stepping up. For example, the AIDS Clinical Trials Group (ACTG) recently launched an HIV and aging working group to explore the needs of this population, and Gilead Sciences, which manufactures several blockbuster HIV meds, funded a whole portfolio of related services. But much more data are needed, and that means researchers need to be connected to older people with HIV. That’s where Palm Springs comes in. Members of the LGBT community, like Taylor, have been resettling and retiring in the area for decades. What’s more, thanks to a number of HIV clinics— including Desert AIDS Project’s medical clinic—the city offers a full array of HIV-related services. No wonder Palm Springs now boasts a concentration of older HIV-positive residents, many of whom participated in clinical trials in the early days of the epidemic as a way to access treatment and stay alive. (For a glimpse at this cohort, check out the 2015 documentary Desert Migration, which follows a day in the life of several gay long-term survivors.) This aging population knows firsthand the benefits of participating in HIV research—just ask Palm Springs resident and advocate Timothy Ray Brown, aka the Berlin patient, the first and only person to be cured of HIV. Data from the Ryan White HIV/AIDS program show that more than 10,000 people in Riverside County—home to Palm Springs—are living with HIV, mostly in Coachella Valley and the eastern part of the county. Of note, 78% of all people living with HIV in Palm Springs and the surrounding cities are over 50 years old, 40% are over 60, 10% are over 70 and 1% are over 80; a number of individuals are in their 90s.

28 POZ SEPTEMBER 2019 poz.com

For scientists and advocates like Taylor, this represents a chance not just to research the needs of long-term survivors but also to offer them care, treatment and social networks. The primary way to tap this amazing resource is the HIV+Aging Research Project—Palm Springs (HARP-PS). Launched in 2015, the project describes itself as “a community-based, community-supported coalition of health care providers, people living with HIV, their advocates, their families and friends. Our overarching objective is to enable long-term survivors to live well despite their chronic HIV infection.” Taylor serves as the project’s executive director. HARP-PS also spearheads the popular Positive Life Series, monthly evening seminars about HIV-related topics that include a free meal and American Sign Language interpretation. [Editorial disclosure: POZ’s Jennifer Morton recently joined the board of HARP-PS.] “This coalition, spearheaded by Jeff, has been instrumental in bringing together health care providers, people living with HIV and advocates to develop community-based research that will improve the quality of life for long-term survivors,” notes Jill Gover, PhD, the director of the Scott Hines Mental Health Clinic at the LGBT Community Center of the Desert. Over the years, treatment activists have worked diligently and with little fanfare to make a collaboration like HARP-PS possible and to ensure that long-term survivors remain a crucial and vocal element of the research process. To date, HARP-PS has identified three HIV research priorities for the aging population: cognitive function and memory loss; depression and isolation; and inflammation and related comorbidities. HARP-PS occasionally conducts its own research—mostly psychosocial since it’s not a brickand-mortar clinical research site—but it primarily collaborates with academic researchers in the region (University of California programs in Los Angeles, San Diego and Riverside, to name a few) and across the nation, connecting researchers with the Palm Springs HIV community. Last year, for example, HARP-PS teamed up with Michael Plankey, PhD, an infectious disease epidemiologist at Georgetown University in Washington, DC, to create a snapshot survey about resilience—examining the attributes that lead some folks to thrive with HIV while others struggle— that was rolled out in the Palm Springs community. (More about those survey results later.) “We’ll happily partner with anybody anywhere,” says Taylor, adding that “aging with HIV is not just a Palm Springs problem—it’s a national and global phenomenon,” which is why HARP-PS is working to post the survey online so anyone can access it. “The more data we can get,” he notes, “the better.”

A ONE-MAN STUDY OF RESILIENCE In many ways, Taylor’s own history with the epidemic and treatment research is typical of many long-term survivors. Originally from Iowa, he headed to the University of Chicago to major in Japanese in the mid-1980s, just as AIDS was devastating Boystown, the heart of Chicago’s gay community. Although he suspected he was HIV positive at the time,

FROM TOP: JENNIFER MORTON; COURTESY OF JEFF TAYLOR

Top: from left, Taylor didn’t get tested right away. “I Matt Sharp, purposefully waited until there was Jeff Taylor and some therapy or hope,” he says, “and Gregg Cassin; inset: from left, at the time, that was AZT,” referring Jeff Taylor, to the fi rst HIV med, which was apErin Doty and proved in 1987. He got tested in 1988. Chris Christensen “The fi rst thing I did after getting my positive diagnosis/death sentence,” he says, “was to research available trials.” He signed up with what’s now called amfAR, The Foundation for AIDS Research, to receive a catalog of clinical trials. “The listing,” he recalls, “came in a plain brown wrapper, like it was porn or something.” He also attended community meetings about HIV therapies that were organized by what later became TPAN. By the end of 1988, Taylor was enrolled in ACTG 019, a randomized, double-blind study of AZT (Retrovir or zidovudine) monotherapy. Turns out, he got the placebo. In retrospect, Taylor says, he was lucky because the original dosing in the trial was toxic. Nonetheless, he views that period as “a very positive experience,” a time when the gay community helped its own through research and altruism. “There was this galvanizing sense of ‘we’re all in this together’ given the horrific stigma, the genocidal policies of the Regan administration, etc.

Certainly, the research community’s attitude and dedication were very inspiring and made me want to do whatever I could to help that effort.” Adding to the motivation was the fact that they saw results. “The advances,” he says, “were coming fast and furious—at least in terms of preventing opportunistic infections.” But the brutal Chicago winters took their toll on Taylor’s compromised immune system, leaving him with sinus infections the entire season. (Remember, modern lifesaving HIV treatment didn’t arrive until 1996.) And hitting the books and working full time as a ward clerk in a neonatal intensive care unit at the university hospital didn’t help. He’d get sick pulling all-nighters, and fatigue became constant. When he came out as gay to his parents, Taylor recalls, “they stopped paying my rent because they ‘wouldn’t support my lifestyle.’” Something had to give. Worried that another winter would kill him and watching his friends die around him, Taylor moved to sunny San Diego in 1989. He became involved with the ACTG trial site at the University of San Diego under renowned virologist Douglas Richman, MD. Taylor also helped start their local community advisory board (CAB) for HIV research and joined the national CAB, now called the Community Scientific Subcommittee.

poz.com SEPTEMBER 2019 POZ 29

30 POZ SEPTEMBER 2019 poz.com

“WE DON’T KNOW WHAT HAPPENS AS PEOPLE AGE WITH HIV.

IT’S A HUGE UNANSWERED QUESTION.”

they are proved effective in a large, ranJeff Taylor advocates for domized clinical trial—which translates HIV and aging to a 5,000-person five-year trial costing research. more than $90 million, an endeavor beyond the scope of anything AMC had undertaken. The good news? With Taylor’s and Palefsky’s perseverance, the ANCHOR study is now a reality. The trial is currently under way at more than 20 sites nationwide (to enroll, visit AnchorStudy.org or call 844-HIV-BUTT).

VITAL LONG-TERM SURVIVORS Taylor now brings his results-oriented research advocacy to long-term HIV survivors living in the Coachella Valley and, ultimately, across the globe. Taylor began visiting Palm Springs as a tourist. But in the late ’90s and early 2000s, he noticed that the city was transforming from a “burned-out spring break destination under Sonny Bono”—the city’s then mayor and, yes, also Cher’s famous ex—“and becoming an up-and-coming trendy destination renowned for its mid-century architecture.”

ARI MICHELSON

The experience was critical to his activism. He attended national meetings, learned about the numerous HIV research programs at the National Institutes of Health and had a front-row seat as early AIDS activists fought their way into ACTG meetings. “They were a fractious group,” Taylor recalls. “I’ll never forget the first meeting I attended where people were screaming at each other, and one stormed out of the room knocking over some chairs on his way out. I asked one of the cochairs—a preternaturally calm mother figure named Allegra Cermak, who is the community coordinator for ACTG to this day—‘Was it always like this?’ She responded, ‘Oh, it’s much better than it was—they used to throw the chairs at each other.” Taylor’s involvement in research advocacy became more specialized as it grew. He joined the AIDS Treatment Activists Coalition, a national volunteer group that advises the pharmaceutical industry in the United States and Europe on research and clinical trials. And while he served on the national CAB, the issue of body-fat redistribution emerged as a problem for people on HIV treatment, so he helped found the Lipodystrophy Subcommittee to research the issue. These experiences served him well in the late ’90s when he faced another health crisis: anal cancer. He had been diagnosed with anal herpes years before, but it had resolved once he got on HIV treatment and his immune system recovered. When problems resurfaced, he researched the topic and came across Joel Palefsky, MD, a preeminent expert on diseases related to human papillomavirus (HPV), a common cause of anal, cervical and oral cancers. At the time, Palefsky recommended that people at risk get anal Pap smears. Taylor asked his own doctor about this and was told the lab wouldn’t process a sample from a man. Instead, Taylor had to endure several biopsies and was eventually diagnosed with Bowen’s disease, a slow-progressing skin cancer typically seen in elderly men. His doctors didn’t want to remove it. Taylor insisted. The docs held firm. So, armed with the lessons of self-empowerment, Taylor found a surgeon in Los Angeles who, using laser surgery, successfully removed the cancer as well as scar tissue from the botched biopsies. That ordeal inspired him to become involved with the AIDS Malignancy Consortium (AMC), a global clinical trials group focused on HIV-related cancers and supported by the National Cancer Institute. Palefsky founded AMC’s HPV Working Group, and Taylor teamed up with him to develop the Anal Cancer/HSIL Outcomes Research (ANCHOR) Study. “Jeff has been a great ally,” Palefsky tells POZ, “a steady and determined supporter of research on prevention of anal cancer and a tremendous advocate for greater education and access to prevention services for the LGBTQ community.” One of AMC’s goals, Taylor says, is to make anal Pap smears a standard of care for anal cancer prevention just as it is for cervical cancer prevention. As Taylor puts it: “It’s the same virus, the same type of cells infected, just a different location.” But insurers won’t cover anal Pap smears unless

Smitten, in 2001, Taylor made the city his new home. “Of course,” he says, “it was gay men priced out of San Francisco and Los Angeles who thought they were going to die or who were leaving stressful careers and cashing out of their San Francisco homes in the tech boom who moved to this sleepy little resort town and started buying and fixing up these houses, and, as we always do, we started a gentrification trend.” The snapshot resilience survey HARP-PS conducted last year offered a more detailed picture of the local long-term survivors. It found that they had been living with HIV an average of 30 years (with a range between 10 and 40), that 95% reported an undetectable viral load; 70% were college graduates; 50% lived alone; 60% were single; and 65% reported having factors that increased their resilience (these include experiencing less anxiety and depression, enjoying more companionship and having a pet). An interesting sidenote on research into long-term survivors: The HARP-PS survey was pioneered at the national Multicenter AIDS Cohort Study (MACS), which was founded

in 1984 and to this day follows men who have sex with men who are living with or at risk for HIV. Recently, MACS combined with its female counterpart, the Women’s Interagency Health Study (WIHS), to form one cohort. Over the years, so many MACS participants have ended up in the Palm Springs area that MACS’s Los Angeles– based researchers travel to them rather than have the men visit the LA site each month. And Taylor is advocating with researchers to enroll more “old-old” survivors—people in their 70s, 80s and 90s. Taylor acknowledges, though, that in many ways the HIV population in Palm Springs and the Coachella Valley lacks diversity. “We’re always looking,” he says, “to seek out underserved populations, like people of color, women, the growing trans community and the woefully underserved HIV-positive deaf community.” That doesn’t mean that Taylor and others collaborating with HARP-PS haven’t made progress in understanding aging and HIV. “What we’ve learned from our focus groups,” Taylor says, “is that it’s the isolation, depression and emotional and mental health issues that keep people from taking care of themselves and just being happy. AIDS Survival Syndrome [ASS, a form of posttraumatic stress disorder] is real, and we need to address it.” That’s a challenge, he says, because when effective treatment arrived, most HIV-related health programs, like Ryan White, switched their focus from providing quality of life services to simply getting people on meds. To further its own research—primarily on isolation and depression, “the biggest unmet needs,” in Taylor’s words— the HARP-PS team has applied for several grants from the Patient-Centered Outcomes Research Institute (PCORI), a nongovernmental effort that’s part of the Affordable Care Act and funds research to help people make better health care decisions. Two projects already funded and under way include the Obesity and Healthy Thinking Study, which aims to show whether Egrifta (tesamorelin, a drug that stimulates the release of human growth hormone and is already approved for other uses) may improve brain function, and the ANCHOR study. (To learn more about these and future studies, visit HARP-PS.org.) “One project on our wish list,” Taylor says, “is to work with existing pet programs for people living with HIV to evaluate how pets improve quality of life. Quantifying this would help justify funding for programs that place pets with people and help subsidize their care, as a vet bill can prevent people on fixed incomes from keeping a pet.” Once again, more research is needed. The good news is that it’s forthcoming, thanks not only to scientists and advocates like Taylor but also to people aging with HIV who share their own life experiences and voice their concerns. Decades into the epidemic, resilient long-term survivors continue making vital contributions to the HIV community. They are leaving a legacy of willpower, intellect and guts for future generations to come. Q

poz.com SEPTEMBER 2019 POZ 31

OUR ESTEEM FOR THEIR HIV ACTIVISM— FROM THE RED CARPET TO BEYOND—IS A CONSTANT.

BY MARK S. KING

FRAMES: ISTOCK

Celebrity is a curious thing. It is an exalted state of being that doesn’t apply only to movie stars or the glamorous creatures on the red carpet. Celebrities are often beloved not because they have fame and fortune beyond our reach but because they might be us. In their faces we can see ourselves, wrapped in a different package, perhaps, but fighting hard for something we, too, believe in. Coverage from POZ—left, top row: Pedro Zamora, Elton John, Jerry Herman; middle row: Barbara Lee, Greg Louganis, Hydeia Broadbent; bottom row: Sharon Stone, Larry Kramer, Emma Thompson; right: Elizabeth Taylor

poz.com JULY/AUGUST 2019 POZ POZ 33

poz.com SEPTEMBER 2019 POZ 33

That is especially true in the HIV arena. We bestow celebrity status to community-based heroes as much as to the famous because we know the courage it takes to speak out as a person living with HIV or to stand up for us as an ally. The people chosen to grace the covers of POZ through the years are a testament to these qualities. They might be a celebrity from Hollywood or sports, an AIDS activism icon or an emerging advocate bringing new energy to the field. Our esteem and gratitude for them is a constant. Pedro Zamora appeared on the third issue of POZ and brought with him celebrity in all the forms we admire. He was a newly minted television star, appearing on MTV’s hot new reality show, The Real World , and he was an HIV advocate finding his voice and using his new national platform. He disclosed his status as a gay man living with HIV to an enormous TV audience, and, over the course of a few episodes, he became a star. Zamora was beautiful. He left us breathless. He knew who he wanted to be and the impact he wanted to have. Only months after he appeared on the August/September 1994 issue of POZ, Zamora died of AIDS-related complications at age 22. The world mourned along with us because he allowed us all to get to know him with all the intimacy the new genre of reality TV allowed. Everyone, it seemed, was a little bit in love with Zamora. Larry Kramer, the godfather of ACT UP and GMHC, was photographed in stark black-and-white on the April/ May 1995 cover, and he was grinning. It was a cheeky expression for a man so famous for his righteous anger, and the first of three cover appearances the mercurial writer and activist would make. Conservative social critic Andrew Sullivan wrote the first Kramer cover story (Kramer would return the favor for Sullivan’s cover story two years later), in which Sullivan has a meeting of the minds with Kramer, with whom he often disagrees. “Whatever history makes of Larry Kramer’s role in this epidemic,” Sullivan wrote, “it will have to record

34 POZ SEPTEMBER 2019 poz.com

that...Larry Kramer was right.” The world of sports was delivered a shocking blow when basketball star Magic Johnson announced in 1991 that he was HIV positive and retiring. For advocates, the news was met with conflicting emotions: deep empathy for a man who was dealing with his new diagnosis and a sense of curiosity about how one of the most famous sports stars in the world might use this as an opportunity to educate and fight HIV stigma. He eventually formed the Magic Johnson AIDS Foundation, but the normalcy of what he did in the years that followed his announcement changed public perceptions of people

Left: Andrew living with HIV. Johnson unretired, Sullivan, Larry got back on the court and went on Kramer; with his life. above: Magic “America remains largely igJohnson norant about the nuances of the epidemic, but watching Magic Johnson play major-league basketball has given us a deeper understanding about the possibilities of life with AIDS,” wrote Bruce Schoenfeld in his 1996 POZ cover story about the athlete. “No other person with HIV has driven home that point so clearly; Johnson does it every working day.” The theater community has suffered massive losses over the years, so the ebullient face of Broadway composer Jerry Herman on a 1997 cover of POZ was a joyful, soothing balm. The tunesmith behind Hello, Dolly! credited the advent of protease inhibitors, a new class of HIV medications at that time, for his renewed vigor, and he expressed pride over his part in bringing the drugs to approval by the Food and Drug Administration (FDA). “My medical records were sent to the FDA along with

many hundreds of others to help get the drug approved,” Herman said. “I think that’s the best thing I’ve done for this world.” Speaking of joy, the wide-eyed exuberance of cover subject Hydeia Broadbent, who was all of 4 feet tall and 13 years old when she appeared on the October 1997 POZ cover, inspired readers everywhere. With a preternatural charm and intelligence, the barely-ateen, who had been living with HIV since birth, made HIV education the mission of her young life. Broadbent’s cover story included her words in front of the 1996 Republican National Convention, spoken to a TV audience of millions. “I am the future, and I have AIDS,” she said. “I am Hydeia L. Broadbent. I can do anything I put my mind to. I am the next doctor. I am the next lawyer. I am the next Maya Angelou. I might even be the first woman president.... You can’t crush my dream. I am the future, and I have AIDS.” The cover of POZ traditionally featured a person living with HIV on its cover—that is, until the November 1997 issue. That is the month that AIDS activist and film legend Elizabeth Taylor appeared on the cover in a photo taken by her close friend, actor Roddy McDowall. All of Taylor’s candor and beauty were on display in the cover story. Even while recuperating from brain surgery, Taylor remained feisty and laser-focused on her HIV advocacy. The founder of both The Elizabeth Taylor AIDS Foundation and amfAR, The American Foundation for AIDS Research, was reflective about the source of her altruism. “I find being ‘Elizabeth Taylor’ really boring,” she said. “I think if you were born with privileges—or given privileges—then you should share them. Like money—it’s to share. I’ve known too many people who just sat and hoarded and were miserable. Just miserable SOBs. I have always believed that giving is one of the reasons that we were put on this earth.” The famously shy Olympian Greg Louganis opened up to POZ about his life more than 10 years after hitting his head on a diving board at the 1988 Olympics—and facing backlash when he revealed in his 1995 memoir that he was gay and living with HIV at the time of his accident. By the time POZ featured Louganis on the cover in 1999, he had grown philosophical about the incident and the media frenzy that followed. “When the book came out, there were all these debates on blood in the pool and all that,” Louganis said. “A lot of good information was getting out there, and that made me feel OK. It’s important to know how you get HIV—and how you can’t get it. And you cannot

poz.com SEPTEMBER 2019 POZ 35

get HIV from a chlorinTop: Javier Muñoz; ated pool.” right: Elton Famed photographer John Herb Ritts was known for his work behind the camera, but he took the spotlight on the cover of the April 2003 issue for a posthumous story about honesty in obituaries. Since the early days of AIDS, obituaries have often skirted the cause of death to protect the family or avoid HIV stigma. But Ritts’s death from “pneumonia,” as stated by his publicists, struck many as disingenuous. Nevertheless, out lets such as The New York Times repeated the claim without further questions. “It was downright creepy to see a Reaganera euphemism for AIDS pop up as the cause of Ritts’s death in obituary after obituary,” activist Michelangelo Signorile said in the piece. “Once again, this is a disease that dare not speak its name.” One of the most profound experiences in American theater of the late 20th century was arguably Tony Kushner’s Angels in America, which took on mythic status for anyone who had the good fortune of seeing it onstage. An HBO production of the play, directed by Mike Nichols, became the lead subject of the December 2003 issue.

36 POZ SEPTEMBER 2019 poz.com

Emma Thompson appeared as the titular angel on the cover, representing an all-star cast that included Meryl Streep and Al Pacino. The trenchant drama, “a gay fantasia on national themes,” blended big political debate with the intimacy of illness and death during the early AIDS crisis. Actress Sharon Stone brought pure Hollywood glamour back to the cover in December 2007, in a story about her prodigious skills as a fundraiser for amfAR. Rather than push the tragic aspects of the epidemic, Stone was proving

quite effective at using her high-wattage star power to encourage, charm and cajole major donors out of many millions of dollars. “She wields her beauty, her figure and her Hollywood persona to maximum effect,” wrote editor-in-chief Regan Hofmann about the formidable star. “The mix is made all the more powerful by an ingredient especially compelling in a big blonde: big brains.” The power of Washington, DC, is an intoxicant as heady as all of Hollywood, and few things can be more effective than having a compelling political figure in your corner. The January/February 2012 cover story was a profile of Democratic Congresswoman Barbara Lee of California. The former social worker has made a political career of speaking up for the vulnerable and underserved. Representative Lee was covered because of her agenda to get global aid to countries dealing with AIDS, make medications affordable in the United States and fight the unjust criminalization of people living with HIV. “Make no mistake,” Lee said. “The world definitely has the money to end AIDS.” There are titans of the music industry, and then there are living legends like Elton John. A longtime friend and ally of people living with HIV, John appeared on the December 2012 issue on the occasion of the release of his book, Love Is the Cure. The memoir revisits his drug and alcohol addiction

and recovery and how his friendship Left: Herb Ritts; with teenager Ryan White inspired above: him to more fully commit to the fight Barbara against HIV. Lee In the excerpt printed in POZ, John had the role of governments on his mind. “It is all too easy for political leaders to think about AIDS only in the abstract,” he wrote. “It is all too easy for them to forget that there are real people counting on them for help, people who deserve the same chance to live a long life as anyone else.” The day before Broadway star Javier Muñoz took over the lead role in the musical phenomenon Hamilton, he told The New York Times he was living with HIV. There aren’t many larger stages in the world on which to disclose your HIV status. In his October/November 2016 cover story, Muñoz discussed his bold move. “I made the choice to disclose now to give hope to someone somewhere in this country or around the world who does not have the type of opportunities I’ve been given,” he said. “There are still people who don’t understand how the virus is transmitted. There are still people who don’t understand what undetectable means. There’s a bias that still exists. That to me is reason enough to be outspoken and to live out loud.” Standing alongside the big marquee names on the cover of POZ over the years are a legion of community advocates and newsmakers held in tremendous esteem by our community. To begin listing them would result in an avalanche of names, a veritable landslide of the deserving, the heroic, the game-changers and the grassroots advocates doing their work on the front lines every single day. We know the people living with HIV speaking up at the planning meeting or the candlelight vigil. We watch them launch new programs, spread treatment news, tell their stories, lead a community. We see them on the pages of POZ, and we relate to them because we know what it means to stick our necks out, take a stand, risk rejection and speak up. We look up to the stars, and we see ourselves. Q

An excerpt from POZ at 25: Empowering the HIV Community Since 1994 by Smart + Strong. Copyright © 2019 by CDM Publishing, LLC. All rights reserved. Go to POZ.com for more. poz.com SEPTEMBER 2019 POZ 37

Yours in the Struggle HONORING 30 YEARS AT NMAC

BY ORIOL R. GUTIERREZ JR. PHOTOGRAPHY BY JONATHAN TIMMES

PAUL KAWATA IS executive director of NMAC (formerly the National Minority AIDS Council). The nonÂprofit organization seeks to normalize discussions about race and ethnicity within the HIV movement, bend the curve of new HIV diagnoses and retain people of color living with HIV in care. In 2019, Kawata commemorates 30 years leading NMAC.

What does your 30th anniversary at NMAC mean to you?

I came to Washington, DC, in 1985. It was the start of President Reagan’s second term. We were told a cure or vaccine would happen in five years, so I left my family and my friends in Seattle kind of naively to help. For me, this anniversary is about honoring the people who came before me and the leaders I got to meet along the way. I owe a great debt to so many who, for whatever reason, saw this kid and said, “Come to Washington.” This occasion also gives me the chance to talk about how we’re finally going to end the HIV epidemic. Even if we were to end the U.S. epidemic in 2030, there would still be more than 1 million people living with HIV who will need care. We have to make sure that we’re building the next generation of leadership to continue to do the work. Tell us your goals for NMAC’s 2019 United States Conference on AIDS (USCA) and the Biomedical HIV Prevention Summit.

USCA will take place September 5 to 8 in DC, and the summit will be from December 3 to 4 in Houston. Before USCA, the Centers for Disease Control and Prevention (CDC) will have released a funding announcement to 57 jurisdictions to put together their planning councils and build plans to end the epidemic in their jurisdictions. As a result, USCA will focus on helping those jurisdictions. We believe there will be a short turnaround time for their plans, so folks need to hit the ground running. I’ve heard the federal government is committing up to a billion dollars. Since USCA is about building plans, the summit is about their implementation. What does it take to reconnect the 400,000 people who have fallen out of HIV care back into care? What does it take to get 1.1 million Americans on PrEP? Advocates interrupted a speech by CDC director Robert Redfield, MD, at AIDSWatch in April in the wake of reports that the federal government wasn’t using its patent rights to pre-exposure prophylaxis (PrEP). Will he attend USCA?

Dr. Redfield will attend. Instead of giving a speech, he will be interviewed onstage in the style of Sunday political shows. A special guest will start the session with a one-on-one interview with Dr. Redfield. We’ll then go to a few panel discussions to air out the topics raised. We’ll be planning for a protest to happen. USCA would not be USCA if there wasn’t a protest. Protests are in the DNA of our movement, so we honor and support them. I believe part of why HIV got the support it did was that advocates said, “No more.” People had the courage of their convictions to stand up to systems that were unfair. Protests are part of how oppressed communities get to speak their truth. Protests are a way for communities who do not have access to have a voice. What is NMAC doing to help the next generation of leaders?

My generation is aging out. After 30 years, I’m getting close to retirement. I acknowledge that I have a responsibility to make sure the next generation of leaders is prepared to take over.

I had a meeting recently with PrEP advocates from the #PrEPforAll campaign. They were very impressive. I told them that part of what made them so important to me was that they are the next generation. Early leaders have spent so much time just trying to stay alive and above water that I don’t know if we’ve been as good at building up the next generation as we could’ve been. I worry. I’m involved in many different projects that are looking at this challenge. I don’t want to leave this next generation to have to solve all the problems by themselves. You mentioned PrEP advocacy. Tell us your thoughts about Undetectable Equals Untransmittable (U=U) advocacy.

I wrote an article recently about the difference between treatment as prevention (TasP) and U=U. TasP was created by scientists. U=U was created by community. I believe federal leaders need to understand that we have to listen to community. If we don’t do that then we’re going to get solutions that don’t speak to community. Prevention Access Campaign made U=U part of the zeitgeist of our movement. U=U has inspired people living with HIV not to just take control of their lives but also to save their community. I think that is extraordinary and powerful. You’ve been in the fight against the virus since the early days. Many people would consider you a long-term survivor, even though you are HIV negative. Please share any insights on how you’ve managed to continue on as an HIV advocate.

I am one of the founders of the defunct National Association of People With AIDS. There were 33 of us—I’m the last one alive. I didn’t understand it at the time, but now I do, that you needed someone there who could tell the reality of what those days were like. I unfortunately have that job. I’m a mess. There were some very real long-term issues that I had to manage in my life because of what I had to do in those early days. There are ghosts that still haunt my life because of the number of hospital beds I visited and funerals I planned. I was so young when I stepped into this job that I didn’t understand how much it would stay with me. We are a generation of activists—whether we’re living with HIV or not— who live with what I call posttraumatic stress from that time. Sometimes we don’t talk about it, so part of why I am talking is because there’s so much stigma around mental illness, especially depression. There is this expectation that if you’re a leader you have everything together. Well, my life isn’t together. The memories of the people I lost continue to hurt me. I say these things because unfortunately we are now seeing all these long-term survivors who are having real issues right now. I want everyone to understand that it’s not their fault. We are messed up and with really good reasons to be. Part of ending the epidemic is about healing. I got therapy during the darkest days of the epidemic. I’m going to be starting therapy again. It’s a bit of a full-circle moment for me. I want us to remember the amazing activists who are now gone. We get to end the epidemic because of their courage and bravery and sacrifice. As we do, we hopefully get to heal. Q

poz.com SEPTEMBER 2019 POZ 39

HEROES

BY ALICIA GREEN

Healing Through Grace

40 POZ SEPTEMBER 2019 poz.com

LaTrischa Miles empowers women living with HIV.

STEVE PUPPE

Like most people living with HIV, LaTrischa Miles remembers the day she was diagnosed with HIV as if it were a second birthday: December 15, 1995. “I had no knowledge of HIV,” says Miles, who resides in Kansas. “When people say ‘positive,’ you think it is something good. But in this case, it was something bad.” At the time, Miles had three children and was going through a separation. She spent three years processing her own diagnosis and learning more about HIV before becoming emboldened enough to advocate for others. “I didn’t want women to go through the same journey that I went through,” she explains. “I wanted to empower women to engage in their own health care and to know about their status.” In 2008, Miles was selected as one of 28 women to help cofound Positive Women’s Network–USA (PWN-USA), a national group of women living with HIV. That year, the founders met for the first time to develop PWN-USA’s vision, mission and goals. A lot has changed since PWN-USA’s formation, according to Miles. Back then, there were no regional chapters and only a small staff. Today, it’s a full-fledged nonprofit with six regional chapters, more than 3,000 members and a board of directors, of which Miles has been the cochair since March. “My goal is making sure that the board is prepared for the future in order to lead into 2020 and beyond,” Miles says. Miles is the founder of GRACE, an 11-year-old monthly support group designed to bring help, hope and healing to women of faith with HIV in Missouri. She also serves as manager of treatment adherence at Missouri’s KC CARE Health Center, where in 2003 she volunteered as a peer educator before rising through the ranks to her current position. In 2011, she held the first public meeting on ending HIV criminalization in Missouri. Representatives included several AIDS service organizations, the city’s health department and the mayor’s office. Since 2018, Miles has testified before Missouri’s House Committee on Health and Mental Health to help a pair of House bills gain some support: HB 166 and HB 167 would update current HIV laws to reflect modern science. “Change starts with individuals who call out injustice when basic rights are being violated,” Miles says about her motivation to speak out. “I kept thinking, Basic rights are being violated here. And that continues to move me to work on this issue.” Despite pushback, Miles and other advocates hope to have the bills heard by another committee next year. “Even though we’ve had our starts and stops, and we haven’t gotten what we consider victory, we know that it’s coming,” she says. In June, Miles was honored with the Elaine Aber Humanitarian Award by Empower Missouri for her public policy work regarding people living with HIV. “I don’t ever want to forget where I came from and how I felt after being diagnosed,” Miles says. “The way to do that is to make sure that you’re always touching the people.”

SURVEY

Would you prefer to use telemedicine on a regular basis if it were available to you?

T Yes T No 11

Do you schedule any of your health care appointments online?

T Yes T No

E-HEALTH E-health—the use of information and communication technology to help manage health care—is on the rise. E-health can beneﬁt providers and patients in many ways. Please take our POZ survey and let us know how e-health is helping you to better manage your health care. 1

T Yes T No

What year were you born? __ __ __ __

Have you ever filled a prescription online?

What is your gender?

Do you receive any health alerts or text reminders on your mobile phone/tablet?

T Male 18

Do you wear or would you be willing to wear technology to monitor your vital signs?

Do you wear or would you be willing to wear technology to monitor your fitness and lifestyle?

ISTOCK

What is your sexual orientation?

What is your ethnicity? (Check all that apply.)

T Less than $15,000 T $35,000–$49,999 T $75,000–$99,999

Have you ever used telemedicine or received health care services without an in-person visit?

T Yes T No

T Other

20 What is your annual household income?

T Yes T No 9

T Transgender

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

Do you use any health-related apps on your mobile phone/tablet?

T Yes T No 8

T Female

T Straight T Gay/lesbian T Bisexual T Other

T Yes T No 7

How beneficial is e-health to you?

T Very beneficial T Somewhat beneficial T Not very beneficial

Have you ever accessed your electronic health records?

T Yes T No 6

Do you participate in any online communities or support groups?

T Yes T No

T Yes T No 5

How frequently do you share health-related information on social media?

T A lot T Somewhat often T Not very much T Not at all

How concerned are you about the privacy of your personal medical records?

❑ Very concerned ❑ Somewhat concerned ❑ Not at all concerned

How frequently do you visit websites for information about your health?

T A lot T Somewhat often T Not very much T Not at all

How much do you rely on e-health technology to manage your health care?

T As much as possible T A moderate amount T As little as possible 2

T $15,000–$34,999 T $50,000–$74,999 T $100,000 or more

What is your ZIP code? __ __ __ __ __

Please fill out this confidential survey at poz.com/survey or mail it to: Smart + Strong, ATTN: POZ Survey #238, 212 West 35th Street, 8th Floor, New York, NY 10001

biomedical HIV prevention

NOW!

summit December 3-4, 2019 | Houston, TX Marriott Marquis Houston www.biomedicalhivsummit.org

PZA514324.pgs 07.23.2019 16:26

ESA