POZ March 2020

A SMART+STRONG PUBLICATION MARCH 2020 POZ.COM $3.99

H E A L T H ,

L I F E

&

H I V

SisterLove at 30 Helping women fight HIV

Clockwise from top left: Dรกzon Dixon Diallo, Kim Canady-Griffith, Linda Scruggs, Nadine Ruff and Phyllis Malone

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-

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

GET MORE INFORMATION } This is only a brief summary of important information

about BIKTARVY. Talk to your healthcare provider or pharmacist to learn more.

} Go to BIKTARVY.com or call 1-800-GILEAD-5. } If you need help paying for your medicine,

visit BIKTARVY.com for program information.

BIKTARVY, the BIKTARVY Logo, DAILY CHARGE, the DAILY CHARGE Logo, KEEP SHINING, 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

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KEEP SHINING.

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.

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CONTENTS

EXCLUSIVELY ON

POZ.COM

Pat Migliore cofounded two groups for women living with HIV.

#ADVOCACY

MAKE A DIFFERENCE 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.

D

#CRIMINALIZATION FIGHT HIV STIGMA

Opinions still vary on whether criminal law should apply to HIV disclosure, exposure and transmission.

However, there is a growing consensus to make laws reflect current science. Go to poz.com/ criminalization for more on how you can get involved in reform efforts.

D

#UNDETECTABLE 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.

D

POZ DIGITAL

READ THE PRINT MAGAZINE ON YOUR COMPUTER OR TABLET

24 EMBRACING LIFE New challenges for women aging with HIV require more research. BY KATE FERGUSON 30 LEADING WOMEN Honoring 30 years of SisterLove.

BY OLIVIA G. FORD 3 FROM THE EDITOR Wind Beneath My Wings

4 POZ Q+A Krista Martel, executive director of The Well Project, shares next steps for the nonprofit as well as reasons she still fights HIV/AIDS.

6 POZ PLANET

Vote Positive • beyond the care continuum for women with HIV • strawberry-flavored meds • about those scary HIV ads on Facebook • Everyday

12 VOICES The winners of the fourth annual POZ Awards; readers share how HIV groups have—or have not—helped them.

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

14 SPOTLIGHT Social media pays tribute to Broadway tunesmith Jerry Herman.

16 CARE AND TREATMENT

Who’s at risk of weight gain? • U=U is becoming common knowledge among gay and bisexual men • better bone health markers for the new version of tenofovir • is the cognitive outlook brightening?

20 RESEARCH NOTES

The state of ending the epidemic • is twiceyearly dosing on the horizon? • research in the viral reservoir • anal cancer rates in the United States

22 ASK POZ Wellness tips on the flu shot, hand soap versus sanitizers, and brainpower boosters

36 HEROES Pat Migliore is a longtime advocate for women living with HIV and has spent decades educating young people about the virus.

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. 242. POSTMASTER: Send address changes to POZ, 212 West 35th Street, 8th Floor, New York, NY 10001. Copyright © 2020 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: KATY BELTRAN; (MIGLIORE) TEGRA STONE NUESS; (GAVEL/BOOKS, BARBED WIRE AND MAGNIFYING GLASS) ISTOCK

SCIENCE, NOT STIGMA

FROM THE EDITOR

Wind Beneath My Wings

Y E A R S

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ORIOL R. GUTIERREZ JR. MANAGING EDITOR

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TRENT STRAUBE SENIOR EDITOR

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I

AM BLESSED TO HAVE strong women in my life— for starters, my mom and my sister. Their perseverance through challenges (such as dealing with me!) is priceless.

Of course, countless other female relatives I admire are no longer with us. Arguably the one who made the greatest impact in my life was my maternal grandmother. She lived with us until I was 9 years old. She could be stern but always had open arms for me.

Then there are the women I’ve come to know through my years here at POZ. They are among the most genuine people I’ve ever met. Whether living with HIV or not, they demonstrate time and again their strength as advocates and fellow humans.

Organizations such as Positive Women’s Network–USA (PWN-USA) and The Well Project have prepared many women living with HIV to become advocates. POZ was pleased to highlight the women and work of PWN-USA in our December 2017 issue as part of our annual POZ 100 list.

In this special issue on women, we revisit the work of PWN-USA by catching up with Pat Migliore, current cochair of the group and a founder of the BABES Network in Seattle. Go to page 36 to read more.

We’re also spotlighting the work of The Well Project. Krista Martel, the executive director, shares her journey as an HIV advocate and what’s next for her organization. Go to page 4 for a Q&A with her, and turn to page 7 to learn about the group’s latest survey.

For our cover story, we’re excited to showcase the work of SisterLove, which is based in Atlanta. In 2019, the group marked 30 years of helping women living with and vulnerable to HIV across the South and around the globe.

Clockwise from top left, the women on our cover are Dázon Dixon Diallo, Kim Canady-Griffith, Linda Scruggs, Nadine

Ruff and Phyllis Malone. Dázon is the founder and president. The other women are distinguished members of the group. Go to page 30 to learn more about SisterLove.

One of the undeniable upsides of living in the era of effective HIV treatment is that, put simply, if we adhere to our medications, those of us with the virus should enjoy virtually normal life spans. That’s no small thing.

However, such success has come with unforeseen challenges. As people living with HIV get older, we not only face many of the usual effects of aging but also less usual outcomes. In simple terms, it seems as if we are aging faster than HIV-negative people.

Research on aging with HIV is increasingly being conducted. The catch is that for much of this time the research was mostly on men.

Research on women aging with HIV is finally getting its due. Go to page 24 for more.

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 MARCH 2020 POZ 3

POZ Q+A

BY ORIOL R. GUTIERREZ JR.

POSITIVE IMPACT

The executive director of The Well Project shares what motivates her to stay in the fight against HIV/AIDS.

K

RISTA MARTEL IS EXECUTIVE DIRECTOR OF THE WELL PROJECT, a nonprofit organization founded in 2002 whose mission is to change the course of the HIV/AIDS pandemic through a focus on women and girls. She joined the group in 2009 as director of online services. When the founder, Dawn Averitt, stepped aside in 2013, Martel took on her current role.

Before The Well Project, Martel was vice president of Visionary Health Concepts, an independent, community-based medical education company. Before that, she was an account executive at World Health Communications, an international medical education agency. She has been working in HIV education since 1995.

What is the origin of The Well Project?

Diagnosed with HIV at age 19 in 1988, Dawn Averitt quickly realized there was very little women-specific information about the virus. That was even more the case when it came to research. The lack of women in clinical trials prevented knowledge of basic things, such as how HIV treatment may affect women differently than men.

So it became her mission to advance research about women and to increase participation in research and clinical trial design by women. She soon became one of the leading female HIV treatment activists in the United States and around the world.

After being asked repeatedly to be on advisory boards, attend conferences and make presentations, she realized there was a need for a centralized place for all this information. That’s how The Well Project was born. She remains an emeritus board member.

What are The Well Project’s focus areas?

We have five focus areas—education and information, community support, advocacy

4 POZ MARCH 2020 poz.com

and leadership, collaborative engagement, and women-focused research.

One example under education and information is our fact sheets. We have them medically reviewed regularly. We have over 120 fact sheets now. We add new ones as our advisers identify gaps.

An example under community support is our blog, A Girl Like Me, which we added when I joined the organization. This blog of women’s voices has become an online community, a sisterhood and a support network. We have published more than 1,000 posts by over 80 bloggers from around the world.

Our advocacy and leadership focus area evolved from seeing how these women’s voices were having such a large reach through the blog and social media. We believed it was important to equip our women with the latest information about HIV treatment. That’s when we developed our webinars, which have grown to become a platform for us to help develop leadership.

We’ve accomplished that by asking our women to participate as speakers.

COURTESY OF THE WELL PROJECT

Attendees of the 2019 Women’s Research Initiative on HIV/AIDS

That evolved into having them do presentations at conferences for us, which has expanded our presence as an organization and has helped them grow.

Under collaborative engagement are our community partners. In 2014, when we relaunched our website, we wanted anyone who came to us to be able to access other respected organizations.

Each group gets a page. We have over 30 community partners [including POZ].

In addition to HIV groups, we are also establishing partnerships with more women-focused groups, including those focused on sexual and reproductive health, to help women living with HIV connect to other resources.

As for the women-focused research, much of that is accomplished through the Women’s Research Initiative on HIV/AIDS (WRI), which is now essentially an annual meeting. Founded in 2003, it started as kind of a think tank.

The idea was to be interdisciplinary with different people working on a topic from various angles. Participants included clinical researchers, social scientists, activists, clinicians, government folks and pharmaceutical industry representatives.

For a while, WRI became independent, but it is definitely back in-house.

COURTESY OF KRISTA MARTEL

Tell us more about the influence of WRI.

During one of the WRI meetings, a question about women’s participation in HIV cure trials came up. Rowena Johnston, PhD, vice president and director of research at amfAR, The Foundation for AIDS Research, was there and heard the question. She looked into it further.

She did an assessment of trial research and realized that in some places, the rate was zero, and in most places, it was 10% or less. This awareness of the huge gap sparked her to change a lot of the grants amfAR was funding to make sure that women were more involved.

After that, we held an entire WRI on cure research in women. That meeting led to a study, which we participated in, to find out what women living with HIV would or would not do in terms of participating in cure research.

The study was led by Karine Dubé, DrPH, of the Gillings School of Public Health at the University of North Caro-

lina, and David Evans, of Project Inform.

The data show the differences between what men and women are willing to do.

There are many other examples, such as changes to how clinical trial research is conducted through the Food and Drug Administration. We have had an impact.

In recent years, we dove into topics such as long-term survivors, including women born with HIV, and aging.

A major topic we’ve explored is U=U [Undetectable Equals Untransmittable] in women. That has led to us trying to be the lead on the issue of breast feeding and U=U, which is increasing in interest.

We cannot say definitively that U=U applies to breast feeding. Currently, U=U is for sexual transmission only. Part of the reason why is that there is so little research on breast feeding and HIV, due to a lack of research on women.

Krista Martel

However, organizationally we continue to focus on the programs we’re committed to in the United States.

We do feel a responsibility to our global audience. One of our responses has been creating fact sheets in Spanish.

How did you get into HIV advocacy?

In college, since I was studying economics, I had written some papers about the Ryan White program. I also specialized in developing countries and worked on issues in Africa related to women, HIV and the economy. So when my sister was diagnosed with AIDS in 1994, I was grateful to have that background.

When I had the opportunity in 1995 to work for a medical education company that specialized in HIV, I took it.

I worked on a program from WORLD [Women Organized to Respond to Life-

“Fighting HIV stigma is what keeps me motivated.”

However, the topic is not that simple.

The U.S. guidelines say that formula feeding is recommended and not to breast-feed, but there is a secondary condition that if a woman chooses to breastfeed that she should be supported.

In real life, we don’t ever hear about women receiving that type of support.

Most often, we hear that they face some sort of HIV criminalization charge or that they fear having their babies taken away if they choose to breast-feed.

As a result, we are digging deeper into the topic to advocate for more research.

How much of the work is international?

The Well Project definitely started out as a U.S. resource, but our online presence has given us a global reach. Most of our site visitors are now from other countries.

Threatening Diseases] called HIV University. It was a peer-based treatment education program for women. We did several trainings over four years.

In 1996, Dawn Averitt was one of the women I met who was part of a training.

Over time, we built a friendship and worked together in various capacities.

During that time, my sister struggled with AIDS. She was often the only female in support groups. She was her doctor’s first patient living with HIV. This was before effective treatment, so she also went through a series of toxic drugs. She passed away in 1998.

At that point, I almost fell out of HIV advocacy. I didn’t know if I could continue the work, but I’ve stuck with it to this very day. Fighting HIV stigma is what keeps me motivated. ■

poz.com MARCH 2020 POZ 5

POZ PLANET

BY TRENT STRAUBE

VOTE POSITIVE

About 1.2 million people are living with HIV in the United States.

That’s a potentially powerful voting bloc, one that Positive Women’s Network–USA is committed to engaging in 2020.

This past fall, PWN-USA, a national group of women and transgender people living with HIV, unveiled Vote Positive, a nonpartisan effort to register, educate and mobilize hard-toreach voters and to ensure that candidates and public officials know about issues important to the HIV community.

Vote Positive is the latest element in a multipronged election strategy from PWN-USA. It follows Organizing for Power: Road to 2020, which launched in April 2019. Through intensive boot camps and monthly web-based training sessions, teams have been taught how to analyze ballot measures and policy proposals, how to elevate issues in an election cycle and, of course, how to develop and implement a field plan to mobilize voters. Since then, teams have kicked off efforts in Alabama, Colorado, Florida, Georgia, Louisiana, North Carolina, Michigan, New York, Pennsylvania, South Carolina and Texas.

“We’ve been preparing for this moment for years,” says Venita Ray, PWN-USA’s deputy director. “Our folks have showed up to save the Affordable Care Act and to defend reproductive rights, trans rights and immigrant communities. We have successfully passed progressive legislation in multiple states. The HIV

6 POZ MARCH 2020 poz.com

community is serious about organizing, From top: canvassing and Vote Positive will make sure every in Atlanta; voter we can reach is able to exercise their registering voters right to cast an informed vote.” in Pennsylvania If you want to brush up on how our government functions—for example, how bills about HIV funding wind their way through Congress—then visit PWN-USA.org for a (free!) five-part tool kit titled “Claim Your Seat at the Table! A How-To Guide to Advocacy for People Living With HIV.” It’s chock-full of infographics, videos and tutorials. There’s also a helpful #PWNVotes Election Toolkit—check out the group’s advocacy poster in this issue of POZ for a roundup of tips. Remember: Elections have consequences.

(CANVASSING) COURTESY OF BARB CARDELL; (REGISTERING VOTERS) COURTESY OF PWN-USA PENNSYLVANIA

PWN-USA leverages the HIV community’s power for Election 2020.

BEYOND THE CARE CONTINUUM 5 factors influencing the well-being of women with HIV

(EXPERIENCES CHART) COURTESY OF THE WELL PROJECT; (GIRL) ISTOCK (MODEL USED FOR ILLUSTRATIVE PURPOSES ONLY)

First the good news: Women living with HIV who participated in a Well Project survey are doing great in terms of the treatment cascade, also known as the HIV care continuum. Of the respondents, 99% were taking HIV meds, 98% were engaged in care and 85% reported having an undetectable viral load.

But these measurements are hardly the only way the survey gauges the health and well-being of people living with HIV. It also helps assess existing barriers and unmet needs. Published in a report titled Together We Are…Making an Impact, the survey findings underscore five main challenges women living with the virus face: HIV stigma; disclosure of HIV status; concurrent health conditions; mental health and trauma; and awareness and impact of U=U, which references the fact that people with an undetectable viral load cannot

transmit HIV through condomless sex.

Described as “one of the most discouraging aspects of stigma” is the fact that 60% of women with HIV reported experiencing self-stigma, such as feeling ashamed, dirty or unlovable. On the plus side, survey respondents said using The Well Project’s online resources for women with HIV helped improve their health, increase their knowledge about HIV, connect with other women and advocate for themselves.

“We were disappointed to see that

Findings from HIV stigma conThe Well Project’s tinues to be such report Together a pervasive force,” We Are…Making says Krista Martel, an Impact the organization’s executive director.

“However, we were happy to see how significantly The Well Project’s resources decreased self-stigma and increased self-esteem among women living with HIV.” To learn more about the nonprofit, turn to page 4 for a POZ Q&A with Martel.

AN HIV MED THAT TASTES YUMMY! Until recently, HIV drugs for babies and toddlers always came in hard-to-swallow pills or yucky-tasting syrups.

But now there’s Quadrimune. The pediatric formula comes in strawberry-flavored granules that can be sprinkled on food or mixed with milk. What’s more, reports The New York Times, this game-changing med is priced at about a dollar a day. It’s a product of Cipla, which manufactures generic drugs in India. The medication could save thousands of lives, notably in Africa, where nearly 80,000 babies die every year because of HIV-related illness. Meanwhile, the Food and Drug Administration, which approves meds for use in the United States, is currently reviewing Quadrimune; a decision is expected as soon as this spring.

poz.com MARCH 2020 POZ 7

YOU MATTER AND SO DOES YOUR HEALTH

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

DISCOVER HOW TO TAKE DESCOVY

PART OF ONE PILL, ONCE A DAY DESCOVY combined with other medicines in 1 pill is a complete treatment.

MULTI-PILL TREATMENT OR

One DESCOVY pill + other medicines is a complete treatment.

DESCOVY itself is not a complete treatment; it must be taken with other medicines. Do not change your dose or stop taking DESCOVY without first talking with your healthcare provider.

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

What is DESCOVY?

What are the other possible side effects of DESCOVY?

DESCOVY is a prescription medicine that is used Serious side effects of DESCOVY may also include: together with other HIV-1 medicines to treat HIV-1 • Changes in your immune system. Your immune in people who weigh at least 77 lbs (35kg). Do not system may get stronger and begin to fight infections. use DESCOVY to reduce the risk of getting HIV-1 Tell your healthcare provider if you have any new infection through sexual contact. DESCOVY combines symptoms after you start taking DESCOVY. 2 medicines into 1 pill taken once a day. Because • Kidney problems, including kidney failure. Your DESCOVY by itself is not a complete treatment for HIV-1, healthcare provider should do blood and urine tests it must be used together with other HIV-1 medicines. to check your kidneys. Your healthcare provider may DESCOVY does not cure HIV-1 or AIDS. HIV-1 is the tell you to stop taking DESCOVY if you develop new or virus that causes AIDS. worse kidney problems.

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

• 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.

Get HIV support by downloading a free app at

MyDailyCharge.com

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

The most common side effect of DESCOVY is nausea. Tell your healthcare provider if you have any side effects that bother you or don’t go away.

What should I tell my healthcare provider before taking DESCOVY?

• If you are pregnant or plan to become pregnant. It is not known if DESCOVY can harm your unborn baby.

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

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

• All your health problems. Be sure to tell your healthcare provider if you have or have had any kidney or liver problems, including hepatitis virus infection.

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

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

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

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

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

POSSIBLE SIDE EFFECTS OF DESCOVY

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

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

• Changes in your immune system.

• New or worse kidney problems, including kidney failure.

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

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

The most common side effect of DESCOVY is nausea.

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

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

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

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

• Have any other medical condition.

• Are pregnant or plan to become pregnant.

• Are breastfeeding (nursing) or plan to breastfeed.

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

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

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

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

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

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

• Take DESCOVY with or without food.

DESCOVY, the DESCOVY Logo, LOVE WHAT’S INSIDE, GILEAD, and the GILEAD Logo are trademarks of Gilead Sciences, Inc., or its related companies. All other marks referenced herein are the property of their respective owners. Version date: September 2017 © 2019 Gilead Sciences, Inc. All rights reserved. DVYC0119 09/19

PZA519232.pgs 12.06.2019 15:29

ESA

POZ PLANET

BY TRENT STRAUBE

About Those Scary HIV Ads on Facebook…

After prodding from more than 65 HIV and LGBT groups, Facebook removed a selection of ads about Truvada as PrEP, or pre-exposure prophylaxis. The ads were for personal-injury lawyers claiming that the daily HIV prevention med was associated with severe bone and kidney damage. Advocates claimed that the ads were false and misleading and that they caused public harm by scaring people away from the med. The truth is that PrEP is highly effective and safe.

Facebook’s third-party fact-checkers at Health Feedback looked at the ads and concluded that they lack context and are misleading. At issue is that an HIV drug in Truvada can cause kidney damage and decrease bone density in susceptible people. This is less likely for HIV-negative people who take Truvada for prevention than it is for HIV-positive people who take

EVERYDAY March

These dates represent milestones in the HIV epidemic. For more dates related to the history of HIV/AIDS, visit poz.com/aidsiseveryday. BY JENNIFER MORTON

Results from the first phase of the PARTNER STUDY show that no person living with HIV who was taking antiretroviral therapy and had an undetectable viral load transmitted HIV to a partner. (2014)

4

(FACEBOOK ADS) COURTESY OF GLAAD.ORG; (THE WHITE HOUSE) ISTOCK; (BROOKS) HIV.GOV

it as part of treatment. The small changes in kidney and bone blood tests seen in PrEP users have not been linked to serious kidney problems or bone breaks. The claim in the ads, according to the fact-checkers, overstates the risk for those taking PrEP and also ignores that “the health benefits of taking Truvada for both HIV prevention and treatment may greatly outweigh the additional risks.”

“The time is now for Facebook to take action on other similar ads,” says Sarah Kate Ellis, CEO of LGBT advocacy group GLAAD, which spearheaded the effort to remove the ads. She urges Facebook to “further review how misleading and inaccurate ads are allowed to be targeted at LGBTQ and other marginalized Misleading communities.”

Facebook ads

SEX POSITIVE, a film about AIDS activist Richard Berkowitz, premieres at the South by Southwest Film Festival.

(2008)

8

The Food and Drug Administration (FDA) announces the approval of the FIRST ANTIGEN TEST KIT TO SCREEN BLOOD DONORS for HIV. (1996)

14

20

NATIONAL NATIVE HIV/AIDS AWARENESS DAY

24

DOUGLAS BROOKS is appointed as the new director of the White House Office of National AIDS Policy. He is the first African American and the first person living with HIV to hold the position. (2014)

10

Photographer TSENG KWONG CHI dies of AIDS-related complications. (1990) NATIONAL WOMEN AND GIRLS HIV/ AIDS AWARENESS DAY

PRESIDENT RONALD REAGAN AND FRENCH PRIME MINISTER JACQUES CHIRAC end an international scientific dispute when they announce that researchers from the United States and France will share credit for the discovery of the AIDS virus. (1987)

29

VOICES BLOGS AND OPINIONS FROM POZ.COM

POZ AWARDS 2019 In an article titled “POZ Awards 2019 Winners,” the POZ editors compiled the winners of the Fourth Annual POZ Awards, which spotlighted the best representations of HIV/AIDS in media and culture. Below is an edited excerpt.

H

ere are the winners of the Fourth Annual POZ Awards as voted for by POZ readers.

Congratulations to all!

Best Celebrity Advocate: Prince Harry Prince Harry continues to demonstrate his rightful place as heir to Princess Diana’s legacy of HIV awareness and compassion. His calendar remains packed with engagements that focus on his commitment to HIV, and his recent embrace of HIV-positive rugby star Gareth Thomas is the latest example.

Best in Film or Television: 5B This documentary chronicling the first AIDS ward at San Francisco General Hospital is required viewing and has been screened at events and conferences all over the country. The tears it elicits are well earned, but the film doesn’t begin and end with tragedy alone. Much humanity is on display, along with inspiration and optimism.

Best Actor or Actress in Film or Television: Chauntae Pink As the lead performer of the YouTube comedy POZ ROZ, Chauntae Pink anchors the short-form series with charm and strength by the truckload. Her character, Rozzlyn Mayweather, leads a carefree

12 POZ MARCH 2020 poz.com

life filled with gay BFFs, sorority soirees, Black Twitter arguments and woke posts on her social media—until an HIV diagnosis crashes the party.

Best Video Series: PrEP Works London-based PrEPster has been producing creative, cheeky advocacy content for years now—a critical mission, given the slow governmental uptake of PrEP (pre-exposure prophylaxis) in the United Kingdom. Its “PrEP Works” series is notable for its global content. Advocates, health care providers and people who use PrEP share their experiences with PrEP’s use, efficacy and reputation in society.

Best in Performing and Visual Arts: Transformation Tunnel On the Atlanta Beltline, an urban walking trail and park project, passersby are confronted by a gorgeous mural, located at the heart of an area of Atlanta hit hard by the epidemic. “We Are All Thriving With HIV!” the mural proclaims. All five of the mural’s artists—John Burnett, Lisette Correa, Ajmal Millar, Maite Nazario and Ash Walsh—are impacted

by HIV in some way, and their personal commitment is evident in the artwork, which was developed by the Centers for Disease Control and Prevention’s (CDC)

“Start Talking. Stop HIV” campaign in partnership with Living Walls Atlanta.

Best in Literature: Nurses on the Inside: Stories of the HIV/AIDS Epidemic in NYC We are all about any project that gives nurses their due, and Nurses on the Inside is a prime example. It is written by two nurses—Ellen Matzer and Valery Hughes—who witnessed the early years of the HIV/AIDS epidemic from the front line. Some of the story is raw and sometimes graphic, but the sights, sounds and smells of their workplace will be familiar to any of us who have been there. Have you thanked a nurse today?

Best Reason to Keep Acting Up: #PrEP4All This activism has produced no less than a House of Representatives congressional hearing, at least one major lawsuit and an ongoing skirmish between the powerful pharma complex and grassroots activists. What is at stake? The profits and patents from the development of Truvada and Descovy as PrEP and the not-so-wild chance that billions could end up returned to the CDC and used for HIV programs. People underestimated #PrEP4All activists when they started questioning the system, but they’re not doing that anymore. ■

HELP WANTED POZ asked readers: How have HIV groups helped you? Here are edited excerpts from an opinion piece posted on POZ.com titled “Help Wanted” that spotlights both positive and negative responses.

“Y

es, they helped me in more ways than one. If it had not been for them, I don’t know where I would be today. Twenty-five years later, I can say they saved my life with things like acupuncture, mental health counseling, case management services, education, dentist referrals. I’m healthy and undetectable 26 years after my diagnosis.”

“The help I received for HIV medication came in the form of a reduction in cost from the manufacturer passed on to the pharmacy, with insurance taking care of the rest as I met the deductible. I needed to find a therapist. Found no one at first.

Now I’m paying for therapy myself.

That’s the extent of any so-called help.”

BOTH IMAGES: ISTOCK

“To be honest, they changed my life. I have a son who is 18. He is HIV negative.

When I was pregnant with him, they put me on an HIV medication to prevent me from passing on the virus to my son. I have been undetectable for years.”

“Though it has been a struggle at times, I have remained self-sufficient, not using assistance from any groups. It is important to me that those resources are not used unless absolutely necessary. These resources are limited. So

using any of them will make them no longer available for someone who may need them more.”

“I have been homeless for years. Asked for help but never received any real assistance. I have heard of people living with HIV who have gotten help.

The excuse I get is that I have not lived in the area, so no assistance is possible.

I tried to get disability, but nothing.

They are just keeping their quota of applications so the funds can keep coming, but no help offered.”

“I am so very grateful for the help I receive. They have a program that covers monthly insurance premiums as well as co-payments on doctor visits, prescriptions and hospital stays. I have qualified for and used this service since they first implemented it. It is income-based.

I could not afford these costs without this help. I feel certain my health would’ve suffered greatly if not for this program. I honestly don’t know what I would do without it. I believe it is partially funded through the Ryan White CARE Act.” “I am now in my first own place after being homeless since 2017. At the time of my diagnosis, I immediately started

researching social service agencies that might help. The first tool I used was the POZ Health Services Directory.

I got mental health, transportation, housing and health care in six cities and across two states since then. Case managers helped. Infectious disease doctors and other providers treated me. Currently, my housing and housing case management are provided by Ryan White funds disbursed through my local AIDS service organization. I couldn’t be more grateful to be a recipient of these services and funds.”

“I have been living with HIV for 30 years and have worked in HIV for many years as well. I recently went on disability and moved. I have found the local AIDS service organization to be less than helpful. I had to call my case manager several times and threaten to call the state Ryan White program and file a complaint just to get referrals to two support groups. I know my way around these services. I would hate to think how a newly diagnosed person is able to deal with these nonresponsive agencies.”

“HIV groups helped me by making me more confident about myself and making me aware that as long as I take my medications, then I will be fine.” ■

poz.com MARCH 2020 POZ 13

SPOTLIGHT

BY JOE MEJĂ?A

R.I.P. Jerry Herman The death of Tony-winning composer and lyricist Jerry Herman of a pulmonary illness on December 26, 2019, at age 88 was followed by a swift outpouring of love for both the man and his oeuvre.

The mastermind behind some of Broadway’s most beloved and enduring works, including Hello, Dolly! and Mame, was as much admired for his buoyantly optimistic anthems as for the buoyant optimism with which he lived his life.

Although not overtly political, Herman was openly gay throughout his career.

Indeed, his La Cage aux Folles, which premiered in 1983, is cited by many as having helped usher gay life into the cultural mainstream.

Diagnosed with HIV in 1985, Herman was outed as being positive in 1992, an event he believed halted his career.

Dispirited but not defeated, Herman focused on overseeing revivals of his musicals, raising millions of dollars for AIDS research and disclosing details of his fight to stay healthy while living with the virus. He appeared on the cover of the February 1997 issue of POZ and in the accompanying interview shared how proud he was to have participated in a clinical trial for an early protease inhibitor that eventually was approved by the Food and Drug Administration. To paraphrase his La Cage collaborator and friend Harvey Fierstein, he was no mere survivor but a conqueror.

Posts may be edited for clarity and/or space.

14 POZ MARCH 2020 poz.com

poz.com MARCH 2020 POZ 15

CARE AND TREATMENT

BY BENJAMIN RYAN

WHO’S AT RISK OF WEIGHT GAIN? People typically gain weight after starting antiretroviral (ARV) treatment—and not necessarily because of improving health.

Researchers conducted a new pooled analysis of weight trends in eight randomized controlled clinical trials of 5,680 people starting their first HIV regimen between 2003 and 2015.

Through two years of treatment, the group as a whole gained a median of 4.4 pounds.

The proportions of the participants who experienced at least a 3%, 5% and 10% increase in weight were 49%, 37% and 17%, respectively. Over time, being overweight or obese became increasingly common.

Being female, obese and younger than 50 years old when starting ARVs were all associated with greater weight gain. When the results were broken down by race and sex, Black women had the greatest average weight gain, followed by Black men.

Looking at the third ARV in individuals’ HIV regimens, the investigators found that integrase inhibitors were associated with an average weight gain of 7.1 pounds, non-nucleoside reverse transcriptase inhibitors (NNRTIs) with an average gain of 4.3 pounds and protease inhibitors with an average gain of 3.8 pounds.

As for specific integrase inhibitors, bictegravir and dolutegravir were each associated with an average weight gain of about 9.0 pounds, while cobicistatboosted elvitegravir was tied to an average gain of 6.0 pounds.

With NNRTIs, participants taking rilpivirine gained an average of 6.6 pounds, while those taking efavirenz put on an average of 3.8 pounds.

And for those taking nucleoside/nucleotide reverse transcriptase inhibitors, the average weight gain was 9.4 pounds for tenofovir alafenamide (TAF, the newer form of tenofovir), 6.8 pounds for abacavir and 4.6 pounds for tenofovir disoproxil fumarate (TDF, the older form of tenofovir).

A separate analysis, led by Andrew Hill, PhD, of the University of Liverpool, reached similar conclusions.

“There are several risk factors for weight gain and clinical obesity: starting treatment with dolutegravir or bictegravir, use of TAF/[emtricitabine], Black race and female sex,” Hill said. “Now we need to predict the consequences of obesity on the risk of diabetes, heart attacks, cancer and adverse pregnancy outcomes.”

For brand names and components of antiretroviral medications, see poz.com/drug_charts/hiv-medications.

U=U Is Becoming Common Knowledge Gay and bisexual men increasingly grasp the fact that people with HIV who maintain an undetectable viral load cannot transmit the virus through sex.

Jonathon Rendina, PhD, MPH, of Hunter College of the City University of New York, led a research team that engaged nearly 112,000 men who have sex with men (MSM) in the United States in an online survey between November 2017 and September 2018.

When asked how accurate they believed the slogan “Undetectable = Untransmittable” (“U=U”) is with regard to HIV-positive individuals transmitting HIV through sexual contact, 55% of the men answered that the statement was “completely accurate” or “somewhat accurate.”

Eighty-four percent of the men who reported they had HIV correctly said the U=U message was accurate, as did 54% of the men who reported they were HIV negative and 39% of the men who said they did not know their HIV status. These figures compared favorably with a previous survey of 12,200 MSM conducted by the same researchers in 2016 and early 2017, which found that 64% of HIV-positive and 30% of HIV-negative men said U=U was accurate.

“Our hope is that understanding and acceptability will continue to grow with ongoing dissemination of the science through public health officials and health care providers and will be enhanced by the significant increase we’ve seen in popular media coverage of U=U as well as dissemination through social networks, [such as] popular apps like Grindr and Scruff,” Rendina said.

U=U

16 POZ MARCH 2020 poz.com

IS THE COGNITIVE OUTLOOK BRIGHTENING?

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

Better Bone Health Markers for the New Tenofovir People with HIV age 60 and older who switch from a regimen containing the older form of tenofovir to Genvoya, which contains an updated version of the medication, experience improvements in bone mineral density.

Whether such shifts will actually reduce the risk of bone fractures is another question.

Genvoya contains the newer tenofovir alafenamide (TAF) plus elvitegravir, cobicistat and emtricitabine. TAF is also included in the combination tablets Descovy, Biktarvy, Odefsey and Symtuza. The older tenofovir disoproxil fumarate (TDF) is a component of the Truvada, Atripla, Complera, Stribild and Delstrigo combo tablets.

For the study, the researchers recruited 167 HIV-positive Europeans 60 years old or older who were taking a regimen containing TDF. They were randomized to stay on their current regimen or to switch to Genvoya.

After one year, those who switched from TDF to TAF saw a median 2.24% increase in bone mineral density at the spine and a median 1.33% increase at the hip, compared with a respective 0.10% and 0.73% decline among those who stayed on the older tenofovir.

“I think a decrease of bone mineral density is not a clinically relevant outcome,” cautioned one of the study’s authors, Jean-Michel Molina, MD, of Hôpital Saint-Louis in Paris. He offered that it “would be more relevant to look at the proportion of patients with osteoporosis.”

To that end, among those who started the study with osteoporosis or osteopenia (a milder degree of bone loss), more people in the TAF group experienced improvements in bone mineral density. The researchers saw no bone fractures related to treatment.

Kidney-health tests indicated that the newer tenofovir, TAF, had less effect on kidney function than TDF on this front.

People in the TDF group experienced stable cholesterol levels through the 48-week mark. Among those who switched to TAF, harmful LDL cholesterol increased by a median of 24 milligrams per deciliter, and triglycerides increased by a median of 31 mg/dl. This is a modest rise but could make some people eligible for cholesterol-lowering statin meds.

The proportion of Swiss people with HIV who report neurocognitive impairment has declined swiftly in recent years.

Katharina Kusejko, MD, of the University Hospital Zurich, and colleagues from the Swiss HIV Cohort Study analyzed data on 8,545 people with HIV who completed five or more neurocognitive impairment questionnaires as part of their routine medical care between 2013 and 2017.

“The population of people living with HIV is an aging population, and hence, all age-related comorbidities, including neurocognitive problems, will be of increasing importance,” Kusejko said.

The proportion of the cohort members reporting neurocognitive impairment, including frequent memory loss or difficulty concentrating or reasoning, declined from 20% in 2013 to 11% in 2017.

The study authors speculated that faster initiation of antiretroviral treatment following HIV diagnosis as well as the use of more potent regimens might explain this rapid decline.

poz.com MARCH 2020 POZ 17

RESEARCH NOTES

BY LIZ HIGHLEYMAN

PREVENTION

TREATMENT

CURE

CONCERNS

While some cities have made strides toward ending the HIV epidemic, progress at the national level has stalled. New York City recently announced that new diagnoses fell below 2,000 for the first time. San Francisco, with a population one tenth the size, saw new diagnoses dip below 200.

But nationwide, around 38,000 new HIV cases still occur each year, according to the Centers for Disease Control and Prevention.

About 14% of people living with HIV in 2017 did not know their status, and 37% of those diagnosed did not have an undetectable viral load. Plus, only 18% of the 1.2 million people who could benefit from pre-exposure prophylaxis (PrEP) had a prescription in 2018. Men were three times more likely to be using PrEP than women (21% versus 7%). About 42% of eligible white people, 11% of Latinos and 6% of African Americans were on PrEP. To help close the gap, the federal government recently announced the Ready, Set, PrEP program to provide the prevention pill for free to those unable to pay.

The first HIV capsid inhibitor may require dosing just once every six months, and few people are likely to have preexisting drug resistance, researchers reported at the 17th European AIDS Conference. GS-6207, from Gilead Sciences, interferes with the viral capsid, the cone-shaped shell that surrounds HIV’s genetic material. In a Phase Ib study, 32 people, mostly new to HIV treatment, received a single injection under the skin of various doses of GS-6207 or a placebo. Ten days after the injection, people who received GS-6207 saw greater viral load declines than those who got the placebo— up to a mean 2.2 log10 drop. Drug levels remained detectable for at least 32 weeks, suggesting that GS-6207 could potentially be administered just twice a year. The most common side effect was mild irritation at the injection site. The capsid inhibitor will now be tested in larger trials of people with multidrug-resistant HIV as well as those starting treatment for the first time.

Much of the HIV reservoir is established soon after antiretroviral treatment begins, new research reveals.

The reservoir refers to inactive immune cells harboring latent HIV; antiretrovirals do not reach this dormant virus, presenting a barrier to a cure. Researchers at the University of Cape Town analyzed viral genetic sequences in the blood of nine South African women before and after they started treatment. Before treatment, the reservoir is constantly changing. But on average, 71% of the women’s reservoirs consisted of HIV strains closely related to those circulating in their blood just before they started antiretrovirals. The researchers suggest that treatment might quiet the immune system in a way that encourages more CD4 T cells carrying HIV to turn into long-lived memory cells and become part of the inactive reservoir. A better understanding of this process might uncover ways to intervene at the start of treatment to reduce the size of the reservoir and increase the likelihood of a cure.

Anal cancer rates are rising in the United States. A recent analysis found that new cases rose by 2.7% and deaths increased by 3.1% between 2001 and 2016.

Anal cancer is caused by human papillomavirus (HPV). HPV vaccination can prevent it, and anal Pap smears can detect precancerous cell changes, known as dysplasia, before they progress to invasive cancer.

A recent Spanish study of more than 3,000 people with HIV showed that annual screening followed by prompt treatment reduced the likelihood of an anal cancer diagnosis by 83%. But such screening is not routinely performed, and it is not yet clear what ought to be done with the results. Another study of gay and bisexual men found that while highgrade dysplasia is common, it often does not progress to cancer, suggesting that routine treatment might not be necessary. The ANCHOR study is testing whether immediate treatment of precancerous cell changes could reduce the risk of developing anal cancer.

20 POZ MARCH 2020 poz.com

Twice-Yearly Therapy? Viral Reservoir

Anal Cancer

ALL IMAGES: ISTOCK

Ending the Epidemic

NEW

WHEN IT’S

HARD BELLY

IT MAY BE TIME FOR

EGRIFTA SV

™

ASK YOUR HEALTHCARE PROVIDER ABOUT NEW EGRIFTA SV , A TREATMENT FOR HARD BELLY (EXCESS HARD ABDOMINAL FAT).

TM

LEARN MORE AT EGRIFTASV.COM

Actual patient living with HIV.

IMPORTANT INFORMATION FOR PATIENTS ABOUT EGRIFTA SV (tesamorelin for injection) TM

What is EGRIFTA SV (tesamorelin for injection)?

• EGRIFTA SV is an injectable prescription medicine used to reduce excess hard abdominal fat (hard belly) in adult patients living with HIV and lipodystrophy. EGRIFTA SV is a growth hormone-releasing factor (GHRF) analog.

• EGRIFTA SV is not for weight loss management.

• The long-term safety of EGRIFTA SV on the heart and blood vessels (cardiovascular) is not known.

• It is not known whether taking EGRIFTA SV helps improve how well you take your antiretroviral medications.

• It is not known if EGRIFTA SV is safe and effective in children, do not use in children.

TM

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Before using EGRIFTA SV , tell your healthcare provider if you: • Have or have had cancer.

• Have problems with blood sugar or diabetes.

• Have scheduled heart or stomach surgery.

• Have breathing problems.

• Are breastfeeding or plan to breastfeed.

• Are taking any other prescription and non-prescription medicines, vitamins, and herbal supplements.

TM

EGRIFTA SV may cause serious side effects including: • Increased risk of new cancer in HIV positive patients or your cancer coming back (reactivation). Stop using EGRIFTA SV if any cancer symptoms come back.

• Increased levels of your insulin-like growth factor-1 (IGF-1). Your healthcare provider will do blood tests to check your IGF-1 levels while you are taking EGRIFTA SV .

• Serious allergic reaction such as rash or hives anywhere over the body or on the skin, swelling of the face or throat, shortness of breath or trouble breathing, fast heartbeat feeling of faintness or fainting, itching and reddening or flushing of the skin. If you have any of these symptoms, stop using EGRIFTA SV and get emergency medical help right away.

TM

TM

You should not take EGRIFTA SV if you: • Have a pituitary gland tumor, surgery, or other problems related to your pituitary gland, or have had radiation treatment to your head or head injury.

• Have active cancer.

• Are allergic to tesamorelin or any of the ingredients in EGRIFTA SV .

• Are pregnant or become pregnant. If you become pregnant, stop using EGRIFTA SV and talk with your healthcare provider.

• Are less than 18 years of age.

TM

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• Swelling or fluid retention. Call your healthcare provider if you have swelling, an increase in joint pain, or pain or numbness in your hands or wrist, • Increase in blood sugar (glucose) or diabetes • Injection site reactions. Injection site reactions are a common side effect of EGRIFTA SV , but may sometimes be serious.

• Increased risk of death in people who have critical illness because of heart or stomach surgery, trauma of serious breathing (respiratory) problems has happened when taking certain growth hormones TM

The most common side effects of EGRIFTA SV include: • Pain in legs and arms • Muscle pain These are not all of the possible side effects of EGRIFTA SV .

For more information, ask your healthcare provider or pharmacist. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088 or to THERA patient support® toll-free at 1-833-23THERA (1-833-238-4372).

This information is not intended to replace discussions with your doctor. For additional information about EGRIFTA SV , go to: www.egriftasv.com for the full Prescribing Information, Patient Information and Patient Instructions for Use, and talk to your doctor.

For more information about EGRIFTA SV contact THERA patient support® toll-free at 1-833-23THERA (1-833-238-4372).

TM

TM

TM

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EGRIFTA SV is a trademark of Theratechnologies Inc. THERA patient support is a registered trademark of Theratechnologies Inc. © 2019 Theratechnologies Inc. All rights reserved.

701-01-12/19

PZA520260.pgs 01.23.2020 12:09

ESA

ASK POZ WELLNESS TIPS FROM POZ.COM

Is it better to clean your hands with soap or hand sanitizer?

According to the Centers for Disease Control and Prevention, washing your hands with soap and water removes more microbes than hand sanitizers do. However, this assumes proper technique—whether you use soap and water or hand sanitizer, there is a right way.

Good technique includes lots of vigorous rubbing and scrubbing.

Clean every part of your hands, including the backs, between the fingers and under the nails. Do this for at least 20 seconds.

No soap or water available? Use a hand sanitizer that contains at least 60% alcohol. Again, apply friction, and be sure to clean every part of your hands.

I RECENTLY GOT A FLU SHOT. CAN I STILL GET INFLUENZA? The flu shot significantly reduces your chances of getting influenza, but you can still catch it. Some years, the flu vaccine’s coverage is better than in other years.

However, despite the fact that the vaccine isn’t 100% effective, it’s still a good idea to get a flu shot. It’s safe for people with HIV to get the shot, but not the nasal spray flu vaccine. Studies show that people who are vaccinated but still get sick tend to experience less severe symptoms and require fewer doctor visits and hospitalizations.

In addition to getting a flu shot, you can minimize your odds of getting the flu by washing your hands frequently (see the sidebar), avoiding close contact with sick people and keeping unwashed hands away from your face. If you do get the flu, you can get relief by treating the symptoms.

—Lucinda K. Porter, RN

Ask POZ is an ongoing section on POZ.com dedicated to answering general wellness questions. Go to poz.com/ask to read more answers, and email ask@poz.com to submit your questions!

22 POZ MARCH 2020 poz.com

Maybe, but there isn’t enough evidence to know for sure. The data aren’t convincing, and research swings from yes to no to maybe. We do know that brain games won’t hurt you, so if you enjoy playing them, continue to do so.

If you want to protect your brain, there is strong evidence supporting the following actions: • Be physically active.

• Eat healthy foods.

• Sleep seven to nine hours most nights.

• Maintain your health, including normal weight, blood pressure and blood sugar levels.

• Stay connected with family, friends and community.

• Reduce stress; try meditation.

• Avoid alcohol, tobacco products and recreational drugs.

In 2020, Brain Awareness Week is March 16 to 20. BrainAwareness.org offers more information.

—LKP

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

Do puzzles help improve memory and brainpower?

Celebrating over 20 years of supporting the HIV community.

For more information about Serostim® and the support services offered, visit www.20PlusYears.com Let’s get social

www.Facebook.com/Serostim

EMD Serono is a subsidiary of Merck KGaA, Darmstadt, Germany. ©2018 EMD Serono, Inc. US/SER/1218/0044 All rights reserved.

PZA506719.pgs 01.25.2019 19:50

ESA

EMBRACING LIFE NEW CHALLENGES FOR WOMEN AGING WITH HIV REQUIRE MORE RESEARCH.

BY KATE FERGUSON

curriculum changes and licensure changes; and support use of the five Ms of geriatrics.”

The Geriatric 5Ms is a five-part standard of care protocol that providers use to treat older adults. It encompasses the diagnosis and management of older adults’ minds, mobility, medications, multi-complexity of their conditions and matters most important to them regarding health outcomes, goals and care preferences.

All medical professionals ought to follow this protocol, Reese says. “We are whole human beings who happen to have HIV, and the whole person must be treated.”

ISTOCK

“When they learned I was HIV positive, they dressed up in what looked like space suits and tried to look in my mouth from a yardstick distance away, which was humiliating, degrading and just not an optimal experience,” explains Reese, who is now 67. “After that, I avoided the dentist for four and a half years—didn’t go for anything—so that led to gum disease and bone loss. I lost six of my front teeth as a result of fearing to be put in that situation again.”

But the incident didn’t crush Reese’s spirit. Instead, she became an advocate—first for herself and then for others.

IN 2005, REESE JOINED OLDER WOMEN EMBRACing Life (OWEL), an HIV support group cofounded by a woman she knew named Dorcas Baker, who was at the time a research nurse at the Johns Hopkins Institute of Clinical and Translational Research. OWEL members are mostly from the Baltimore and Washington, DC, area.

“We support each other by sharing our experiences dealing with stigma, treatment, medication adherence and [through] group and individual support of women and girls living with HIV, those who may be at risk for the virus or those who are caretakers of people living with HIV,” Reese says.

Today, Reese, Baker and other OWEL members are building a coalition called HIV Aging and Long-Term Care in order to fill the gap in information on how HIV affects older women. “Because no one expected us to still be here, nobody thought about what a quality life would need to be like for women with HIV as they aged,” says Reese.

Much like other people who are aging, these women may find themselves undergoing medical procedures, such as hip or knee replacement surgeries, that land them in rehab centers or day care, or they may one day need to relocate to an assisted living facility or nursing home. But these otherwise normal transitions can pose additional challenges for older women with HIV. “The professionals at these places are ignorant, for the most part, about how we who are living with HIV need to be treated and that we’re not infectious,” Reese says. “Most of them have the old group-thought process that happened in the beginning of the epidemic when nobody wanted to touch, clean, feed or go near somebody who had HIV. “The people in these industries haven’t kept up with scientific advances and knowledge about HIV, so we’ve had women— and also men—who’ve had horrendous experiences in nursing homes and assisted-living and rehab facilities, and we don’t want that to happen,” Reese continues. “That’s why we’re organizing the coalition—to build policy; make policy changes,

FOR MORE THAN A DECADE, TONYA TAYLOR, PhD, an assistant professor in the College of Medicine and the Special Treatment and Research (STAR) Program at the State University of New York (SUNY) Downstate Health Sciences University in Brooklyn, has been conducting research on the understudied effects of menopause in older women with HIV. Her goal is to identify effective strategies to promote physical and psychosocial healthy aging in this population.

“I’m using the menopausal transition as a moment to reengage this particular priority population,” she says.

This is because menopause among women with HIV may be associated with a long list of health problems, including co-occurring illnesses as well as a higher risk of hypertension, cardiovascular disease, diabetes and osteoporosis.

“There are also higher rates of anxiety and depression in women with menopause due to normal social losses from death or relocation of family and friends or changes in relationship status (married or partnered, widowed or divorced) and combined stigmas of ageism and HIV,” Taylor adds.

She believes that many older women aging with HIV may not understand how menopause can affect their health.

“First and foremost, women don’t know that their menses [menstrual flow] changing over time has a profound impact on other things,” she explains. “And they may also not be aware that women with HIV undergo an earlier onset of menopause, often with more severe symptoms, compared with women who don’t have HIV.” Taylor has been studying sleep disruption and insomnia during menopause and their damaging effects on cognition and mental health. “Insomnia among people living with HIV—of all ages—is really high,” she says. “Often, people will dismiss problems with sleeping as being minor or just a factor of aging, especially with older adults, and they think there’s nothing we can really do about it.

“But we can do something about it,” Taylor adds. In her new research, she plans to explore the uses of evidencebased strategies, such as cognitive behavioral therapy, “to help menopausal women manage nocturnal hot flashes, which commonly interfere with sleep during menopause,” she says.

poz.com MARCH 2020 POZ 25

CREDIT

Melanie Reese had been living with HIV for about a year when she visited her dentist for a routine checkup in the early 2000s. “Oral health care is so important if you have a chronic illness or are just aging,” she says.

“NOBODY THOUGHT ABOUT QUALITY OF LIFE FOR WOMEN WITH HIV AS THEY AGED.”

BEYOND ENSURING that they’re getting their zzz’s, however, older women with HIV experiencing menopause must negotiate other issues that affect their health and quality of life.

To that end, Taylor has teamed with Michelle Lopez, a colleague who works with GMHC, the storied provider of HIV/AIDS prevention, care and advocacy based in New York City, to create an intervention called CHANGE— named after the euphemism for menopause—which is now a pilot study.

The program identifies basic lifestyle behavior modifications to help older women with HIV improve their health, such as eating more nutritious food, boosting physical activity and reducing the number of cigarettes they smoke. In addition, the intervention focuses heavily on positive sexuality as women age.

Taylor trained Lopez to lead the educational intervention and participate in peer group discussions. “We would bring in other women like ourselves and talk to them about menopause and give them some information,” Lopez says.

Lopez would visit the women at home and listen to them as they talked about what was transpiring in their lives and whether it was helping or hindering their efforts to get and stay healthy. “I allowed them to be themselves,” Lopez says.

“They were all over 50, and I had just turned 50.”

Now 54 and living with HIV for 29 years, Lopez taught herself everything she could about the disease so she could better advocate for herself. “I’m not just depending on a doctor to give me a pill,” she says. Case in point: “I really had to put up a fight for my HIV doctor to give me a referral to see a geriatrician [a physician specializing in aging issues].”

Similarly, at OWEL, Reese cultivates behaviors that empower older women with HIV to discuss their sexual health with their doctors, a skill that’s crucial to their efforts to age well. She encourages individuals to educate themselves about their medical needs and to override the social conditioning that would have them believe doctors always know best.

Reese wants women to reframe the way they think about their relationships with their doctors and to view them as people whose job it is to develop a treatment plan tailored to their unique health needs.

“When we get through talking with [the women], they’re pretty amazed to realize that they do have power,” Reese says, “and can ask their medical providers for certain additional screenings they need, such as a test to check for hepatitis C.” ANOTHER CONVERSATION THAT POSTMENOpausal women should have with their doctors concerns their increased risk of contracting sexually transmitted infections because of the decline in their estrogen levels.

“This change results in the thinning of the mucosa of

26 POZ MARCH 2020 poz.com

the vaginal walls, so it creates vaginal dryness,” Taylor explains. “Less lubrication in the vagina means that tears are more likely to occur during intercourse,” she says, “which allows HIV to enter the body.”

However, many older women—and men—don’t consider themselves to be at risk for HIV. “When postmenopausal women no longer have to be concerned about becoming pregnant, they may not think of things like birth control or condom use or sexual health,” notes Mark Brennan-Ing, PhD, a senior research scientist at the Brookdale Center for Healthy Aging at the City University of New York’s Hunter College.

“I know from some other work that I’ve done that very few women talk to their doctor about sexual health issues after menopause, and yet they remain sexually active, so that’s a problem. And on the other side of that, physicians rarely take a sexual history or address sexual health issues with an older patient,” he says.

Brennan-Ing, one of the principal investigators for the study “Research on Older Adults with HIV 2.0,” presented his findings at last year’s annual scientific meeting of the Gerontological Society of America in Austin.

The takeaway from Brennan-Ing’s talk? Not only will the increasingly older population with HIV be dealing with the long-term effects of the virus, but these individuals will also have to contend with all the other health and social problems elderly people face.

“I think we really need to think about how we’re going to provide care and support for these people,” he says, noting that members of the aging HIV population often don’t enjoy the same resources as others.

IN 1993, THE NATIONAL INSTITUTES OF HEALTH established the Women’s Interagency HIV Study (WIHS, pronounced “wise”), the world’s largest and oldest ongoing longitudinal prospective cohort study of women living with and at risk for HIV. Deborah Gustafson, MS, PhD, a principal investigator and researcher at SUNY Downstate Health Sciences University, uses data from WIHS—now the MWCCS (MACS/WIHS Combined Cohort Study, which also includes men)—for her studies.

She notes that as women with HIV age, they increasingly find themselves on a slew of different drugs, not counting their HIV meds.

“They’re on lipid-lowering medications, antihypertensive agents, or they might be taking type 2 diabetes medications,” she says. “One of the questions they’ve asked and that we’ve been trying to address in WIHS is what influence polypharmacy [taking multiple pills for chronic diseases] has on aging-related outcomes in the women.” These older women

ALL IMAGES: COURTESY OF THE SUBJECTS

with HIV also tend to be more frail and are experiencing cognitive decline.

But WIHS hasn’t filled all the gaps in research, policy and advocacy targeting women’s long-term experiences with HIV. These gaps must be addressed in order to improve the quality of life of older women living with the virus.

The Well Project, a nonprofit community organization devoted to women with HIV, is helping identify these areas of concern through its Women’s Research Initiative on HIV/AIDS (WRI), a multidisciplinary group of advocates, researchers, policy makers and providers inclusive of women living with HIV—many of whom are long-term survivors—which has published an issue brief on the topic.

“Throughout the epidemic, women have been underrepresented in clinical research, and it’s important that women’s unique needs and issues be addressed in the context of aging with HIV,” says Krista Martel, the executive director of The Well Project. “Two other key gaps are research on women who were born with HIV and the impact of long-term exposure to the virus on the aging process.”

Martel is also concerned that the national discussion about the HIV epidemic—notably the federal initiative “Ending the HIV Epidemic: A Plan for America,” rolled out in 2019—focuses too heavily on prevention and may neglect the health and well-being of those who are living and aging with HIV. “One of our key outcomes from the WRI meeting was that women really needed to be included in each stage of the plan,” she says. “It’s extremely important that the multitude of women’s lived experiences are heard by researchers, clinicians and policy makers.”

FOR INSTANCE, TRANSGENDER WOMEN AGING with HIV—a population disproportionately affected by the virus—face special issues connected with the nature of their transition, hormone replacement, conditions resulting from previous diseases or injuries and stigma.

“The life expectancy for most transgender women of color is significantly lower than that for their cisgender counterparts,” Martel says. “So that’s an area where there’s almost no exploration and a huge gap to be filled in terms of research and policy.”

Cecilia Chung, 55, the director of evaluation and strategic initiatives at the Transgender Law Center, has been an advocate for transgender people for more than 20 years.

“Being a transgender woman living with HIV means that in addition to battling the stigma of being transgender, I have to deal with the stigma of being HIV positive and all the traumas in my life that led me to seroconvert,” she says. “The mental

health impact of living with HIV inClockwise from top: Cecilia Chung, Krista tensifies as I am growing older, and Martel and Mark Brennan-Ing it seems that there is another level of stigma I have to struggle with— being older and alone.”

Then there are Chung’s experiences with providers in the health care system to consider.

“I am probably one of the lucky ones who have a regular health insurance plan, meaning that I have more choices to determine if my primary care doctor is a good match,” Chung says. “Sadly, even when I have an exceptional doctor, I still am in a health care system whose health screening process failed to recognize transgender patients, resulting in awkward interactions such as this one when I was asked, ‘Are you pregnant?’” Chung’s reply? “No. I am transgender.”

“It might surprise you how often this type of exchange happens in health care settings,” she adds.

poz.com MARCH 2020 POZ 27

This article was written with the support of a journalism fellowship from the Gerontological Society of America, Journalists Network on Generations and The Commonwealth Fund.

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THE WOMEN’S INTERAGENCY HIV STUDY Still providing data after more than 25 years When the HIV epidemic first hit in the early 1980s, researchers had to determine how the virus affected the immune system.

At the time, scientists established a cohort (group of people) of men for studies—specifically, the Multicenter AIDS Cohort Study (MACS), launched in 1984. Women were not included because the virus mainly affected gay and bisexual men.

Sarah Read, MD “But very soon after that, we realized that we really needed to look at some women as well,” explains Sarah Read, MD, the deputy director of the Division of AIDS at the National Institute of Allergy and Infectious Diseases, part of the National Institutes of Health (NIH). As a result, the Women’s Interagency HIV Study (WIHS) was created in 1993.

Originally, the NIH launched one cohort at six sites— Brooklyn and the Bronx in New York City; Washington, DC; Chicago; San Francisco; and Los Angeles. In 2013, the agency added sites in Chapel Hill, North Carolina; Atlanta; Birmingham, Alabama; Jackson, Mississippi; and Miami. (Recently, the two cohorts were combined to form the MACS/WIHS Combined Cohort Study, or MWCCS.) “This cohort has now allowed us decades of follow-up to see how participants are aging differently compared to populations that are not living with HIV,” says Read.

She notes that early on, researchers looked at basic questions, such as how the virus affected the immune system and how people responded to various medications, doses and regimens.

After successful antiretroviral treatment became available in 1996, scientists started to think about the health and well-being of people living with HIV long-term.

Today, WIHS continues to document the experiences of women with the virus in the United States, steadily moving science and society toward a better understanding of HIV. Over time, researchers will examine other illnesses that occur alongside the virus, such as cardiovascular disease, diabetes, cancer and mental health issues, to assess long-term immune function and comorbidities in people living with HIV. In addition, scientists have focused on the effects of stigma, social isolation and lack of social support and other similar factors.

—KF

COURTESY OF SARAH READ, MD

TRAUMA NEGATIVELY AFFECTS THE health and well-being of women aging with HIV, which has led advocates to urge health care workers to provide trauma-informed care.

This approach moves beyond getting people on HIV meds and helping them attain an undetectable viral load. It seeks to cultivate a safe, affirming and empowering environment.

As Carol Dawson-Rose, a professor at the University of California San Francisco School of Nursing and a researcher at the International Center for HIV/AIDS Research and Clinical Training in Nursing, puts it, “Medication is amazing, but there’s a whole other piece to health that isn’t being addressed,” by which she means the aftereffects of such trauma as violence, addiction, racism and poverty.

“I have a higher need for other services in addition to HIV care, such as behavioral health support and a better understanding of health changes that may be typical to aging adults,” Chung says. “There is evidence that trauma and HIV accelerate the aging process among adults.”

From her perspective, if the epidemic is to be brought to an end, then all older women aging with HIV must be included in these strategies.

“I think it is egregious that my own government still actively erases my existence,” Chung says. “There is research, but there are not enough data on the survival rate of older trans women living with HIV.” Despite a report from the Health Resources & Services Administration that showed trans women over 50 living with HIV are more likely to achieve viral suppression, Chung says many questions remain.

“Does the data represent older trans women who survived and lived longer because they were retained in care? Or did they survive because of better health care access? Or simply because they transitioned after their viral loads were under control?” she asks.

“There are so many questions that need answers, but our government and census seem not to be very keen on learning more about us,” Chung says. “Without allocating adequate resources, I fear that any end-the-epidemic strategies will be in vain.”

It’s a viewpoint shared by many others, both women and men, trans and cisgender, who are aging with HIV. ■

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HONORING 30 YEARS OF SISTERLOVE

BY OLIVIA G. FORD PHOTOGRAPHY BY KATY BELTRAN

The red carpet is unfurled. The stage is set. Flashbulbs pop as hundreds of impeccably dressed individuals enter Atlanta City Hall’s atrium.

At the center of the attention are 30 women, the most resplendent in the crowd.

Most of the 30 are women of color, both cisgender and transgender. Twenty of them have been living with HIV for two decades or more; all are established leaders and change makers in communities across the United States and beyond.

They are members of the 10th annual class of the 2020 Leading Women’s Society (LWS).

On this night—October 18, 2019—we gathered to thank these women for their innumerable, often unheralded contributions to the HIV movement. We also attended to honor SisterLove, the organization that brought them together.

In 2019, SisterLove also marked 30 years of serving women living with and vulnerable to HIV in Atlanta, across the South and around the globe. The group has fought alongside these women for their rights, agency and access to care and dignity within a reproductive justice framework. In 2019, its satellite program in South Africa marked 20 years in operation.

“Putting your names, faces and bodies on the front line of the fight to end HIV, while simultaneously eradicating other oppressions at the intersections, cannot go without recognition and appreciation,” wrote Dázon Dixon Diallo, MPH, SisterLove’s powerhouse founder and president, in a letter printed in the gala program. “We see you, and we follow your lead.”

LWS consists of both awardees and inductees. Nominated by someone in their communities, inductees are selected for their HIV leadership and become awardees once they’ve lived with the virus for 20 years.

Dázon Dixon For the most recent classes, only Diallo holds a existing LWS awardees could proclamation nominate new members. honoring the LWS members are clinical trial 30th anniversary advocates, community health of SisterLove.

workers, policy experts, poets, international speakers, sex-positive opinion writers, parents fighting institutional stigma to make space for their children and much more.

“We really do get those unsung heroes,” says Linda Scruggs, who was honored in the inaugural class in 2009.

“They may never make it to the International AIDS Conference or the stage at USCA [United States Conference on AIDS, the nation’s largest HIV meeting], but they are reaching women. They’re making phone calls, they’re [driving women who need transportation], they’re speaking locally, they’re helping program, they’re case-managing. Nobody would know them if it wasn’t for something like this space.”

Scruggs, who lives outside Washington, DC, tested HIV positive in 1990 and has been working with women in the HIV field just about as long. With Vanessa Johnson, JD, MPA, another 2009 LWS honoree and a veteran of networks of people living with HIV, Scruggs co-owns Ribbon Consulting Group, the only national provider of organizational development, community-building and mobilization owned and operated by two Black women living with HIV. For the past several years, Ribbon has coordinated the LWS weekend, including a daylong institute offering these strong leaders opportunities to reflect, through workshops and group conversations, on what leadership and service mean to them.

“SisterLove doesn’t just acknowledge the work you do,” says Scruggs. “It’s creating a whole new network and resources of support.”

“If we don’t have celebrities who can disclose their HIV [status because of stigma], then we need those who have disclosed their HIV to be the celebrities,” says Dixon Diallo.

“It starts with acknowledging the ones who are open and are leaders.”

poz.com MARCH 2020 POZ 31

In 2009, SisterLove had already existed for 20 years. That same year, a beloved and prominent member of SisterLove’s community, Juanita Williams, was celebrating 20 years living with HIV—though for Williams, celebrating the date she was diagnosed was an annual event. She always made it a big production, “a red-pump affair,” Williams says. “Twenty years [is] a long time after you’ve been told you got six months to live.”

For SisterLove’s 20th anniversary, Dixon Diallo, inspired by Williams, organized an awards ceremony honoring 20 women who had each been living with HIV for at least 20 years and who used their HIV status to respond to the epidemic in powerful ways in their communities. Thus were born the 2020 Leading Women’s Society Awards. The accompanying gala would become the group’s signature annual event.

The women are feted not just at a gala but during an entire weekend of festivities, pampering and a heartfelt private induction ceremony. Williams was among 2009’s honorees.

Williams is known in the SisterLove community as the fi rst client ever to seek out the organization for help. She tested HIV positive in 1989 in South Carolina, where there were virtually no services for women with HIV. Meanwhile, in Atlanta, SisterLove had begun to fi ll some of those vast gaps in services. Williams connected with the organization AID Atlanta, one of SisterLove’s early homes, and soon moved to the city. “SisterLove became family,” Williams remembers, “and a vehicle for my voice.”

Among SisterLove’s first services was a small support group. A nurse Dixon Diallo knew from her days working at Atlanta’s iconic Feminist Women’s Health Center (FWHC) asked whether SisterLove could expand the group to Grady Hospital, where she had started a women’s HIV clinic one half-day a week but lacked the capacity to offer the emotional support women needed.

“I literally would sit in the waiting room” on clinic mornings, Dixon Diallo says. When a few women had arrived, “I would turn off The Phil Donahue Show—that’s how long ago this was—circle up the chairs and then just [start] talking,” she says. She would offer a question for discussion, and they would go from there.

One day, a woman shared that she had left home because family members treated her like a pariah due to their ignorance about HIV. Another woman’s sister was so relentless about keeping the house bleached that she locked her out of the bathroom at night. Another was prohibited from using her house’s washer and dryer. And then there were the anecdotes so devastatingly familiar to many people with HIV about the use of disposable plates and flatware.

“Each one of these women on that day had these horrific stories of how they might not have been homeless, but living where they were was a nightmare,” Dixon Diallo remembers.

So in 1992, SisterLove opened a transitional housing program to give women with HIV an option providing dignity, safety and support—and where they could bring their children.

It was the fi rst program of its kind in the U.S. South. It began in a condo donated by a client; at its peak, the program

32 POZ MARCH 2020 poz.com

operated two houses, one Opposite page, clockwise from top of which remains the left: Dorothy Grant group’s headquarters. (left) and Gena Grant; “They made it a homey Tiffany Nicole; Loretta place,” comments Phyllis Ross; LaDonna Perkins; Malone. The housing proAngelisa Austin (center); gram was how she first and the Kapp N Kompany encountered the organizaperformance troupe tion. Malone, a mother of four, tested HIV positive in 1996. In 1998, she was released from prison and, when she could no longer abide staying with her mother, moved into the LoveHouse, as it is still called, with her young son and daughter.

The program offered self-help groups, case management, kids’ activities, spirited holiday celebrations and more. Malone and her kids stayed until 2001. “I loved staying there,” Malone recalls. “We had somebody who cared about us.”

For years after leaving the LoveHouse, Malone struggled with substance use, but she always remained connected with SisterLove, attending meetings and remaining friendly with a staff member who had gotten to know her family.

When she stopped doing drugs, “I had a lot of time on my hands,” she says, so she began volunteering with SisterLove, then worked with the group on projects as a paid contractor.

In 2013, she was told she could no longer be a contractor.

“They wanted me to be on staff,” Malone says. She has been SisterLove’s prevention specialist ever since. She was inducted into LWS in 2016 and attends the gala each year as an alumna and a SisterLove staffer. “SisterLove made me who I am today,” says Malone. “I found my voice.”

The human right to parent one’s children in a safe, sustainable community—of which the transitional housing program is one very literal example—is a key pillar of the reproductive justice (RJ) framework that SisterLove helped to articulate and continues to uphold.

This, alongside the other basic pillars—the right to bodily autonomy, to have or not have children—link reproductive rights to struggles against race and class bias, violence, criminalization, environmental injustice and other social issues negatively impacting communities of color. The framework was formed and named at a gathering of Black feminists in 1994, Dixon Diallo among them.

“Though there are almost as many interpretations and co-optations of the term [sexual and reproductive justice] as there are people using it,” wrote Dixon Diallo in a 2017 Georgia Voice op-ed, “I work with the idea that sexual and reproductive justice exists when all people have the social, political and economic power and resources to make healthy decisions about our gender, bodies, sexuality and families for ourselves and our communities.”

Loretta Ross, one of the “midwives” who birthed the RJ movement and a visiting associate professor at Smith College, attended the LWS gala. She is also a close friend of Dixon Diallo. Ross has spent nearly five decades launching or

managing nonprofit feminist organizations, organizing historic marches and conventions, publishing books and inspiring generations of activists.

She and Dixon Diallo met in the mid-1980s.

Onstage at the gala, Ross affectionately reminisced about a young Dixon Diallo’s spiked haircut and irrepressible energy.

“Dázon has done the best work in the world of knitting together the RJ and the HIV/AIDS movements,” Ross says.

“I remember getting involved in conversations about women with a diagnosis being discouraged from having sex, having children, doctors attempting to force women with [HIV to be sterilized].” These forms of reproductive oppression are similar to those experienced by women of color in general, she adds. “Dázon has been at the front lines of pointing this out.”

Ribbon Consulting’s Johnson, who also cofounded Positive Women’s Network–USA, the fi rst and largest national advocacy network of women with HIV, noted that this was true in HIV as well. “Pushing the community to embrace sexual and reproductive health” is also among SisterLove’s contributions, she says. “From the perspective of the South and Black women, [it was] SisterLove that really made us pay attention to that body of work.”

A standing ovation at last year’s awards ceremony Byllye Avery at Spelman College in 1983. Both that gathering and NBWHP have shaped Dixon Diallo’s work ever since. “[Avery] is the reason I do what I am doing now,” Dixon Diallo says. As Ross and coauthors write in the book Undivided Rights, NBWHP pioneered the self-help approach to the promotion of Black women’s health, a method grounded in the power of telling personal stories to address trauma, connect women to one another across lines of difference and move women to take an active role in individual and community healing. This model inspired a movement of health organizations by and for women of color, including SisterLove.

In 1997, SisterLove leaders, including Williams and Dixon Diallo, convened SisterSong Women of Color Reproductive Justice Collective as a multiethnic, multi-issue national network. To this day, SisterLove shares space with SisterSong at Atlanta’s MotherHouse, also the original home of NBWHP. When SisterLove became an independent group, after three years of fiscal sponsorship by AID Atlanta (under the directorship of Sandra Thurman, who became the AIDS czar for President Bill Clinton), its staff worked from the MotherHouse’s screened porch. SisterLove now owns that house.

“We always considered NBWHP as an incubator organization” for women’s endeavors against the grain of mainstream Black communities, Avery says, “so I was just really glad to have folks come forth to work on HIV/AIDS. Half of Black folks were scared of people with AIDS [at that time], so this was welcome news to me.”

One of SisterLove’s legendary programs is its education and prevention event, the Healthy Love Party. Conducted with groups of women already familiar with one another (sorority sisters, office mates) in their own environments, gatherings feature frank talk not just about HIV and other health conditions but also the things that make sex fun.

“It was the fi rst time I heard anybody ever talk about sex in the context of women and HIV,” Johnson says of Healthy Love Parties. It became the Healthy Love Workshop when, after several years of validation, it officially entered the Centers for Disease Control and Prevention’s (CDC) compendium of evidence-based interventions.

“Dázon really modeled well that one can talk about sex.

She teaches her staff that—they don’t talk about it with hang-ups,” Johnson says. “[Sexual and reproductive health

“SISTERLOVE MADE ME WHO I AM TODAY.”

In the 1980s, as the HIV movement grew with a narrow focus on white gay men, so, too, did a reproductive health movement centered on white, largely middle-class women’s concerns. For nearly six years during that period, beginning when she was an undergraduate at Spelman College, Dixon Diallo worked at FWHC in Atlanta.

She recalls that when she first learned about HIV and its impact on Black women, she tried to start the program that would become SisterLove at FWHC. However, antiabortion forces were also gaining ground, and resources to respond to that onslaught took precedence over an HIV program.

“It was already very clear to me the immediate connection between access to choice around reproductive health options and access to information and options for preventing HIV and [sexually transmitted infections],” Dixon Diallo said in a 2009 interview with Ross for an oral history. “Those things weren’t readily available in the same place.”

Dixon Diallo was also part of the National Black Women’s Health Project (NBWHP, now Black Women’s Health Imperative). In fact, she had attended the group’s seminal founding meeting, convened by veteran Black women’s health activist

34 POZ MARCH 2020 poz.com

is] a dialogue, along with all the techniques and skills. If we’re not talking, that’s not sexual and reproductive health.”

“Indigenous women, women of color and trans people have always fought for Reproductive Justice,” begins the “Herstory” section of SisterSong’s website. By that token, Nadine Ruff has been working to secure safety and justice for LGBT people and women, without necessarily calling it “RJ.” “I was trying to help everybody that was living with HIV,” Ruff says. “When I started to realize that there were a number of people that suffered more, like women of trans experience and women period, then I started focusing on that.”

Ruff, a mother and grandmother, tested HIV positive in 1987. After finding peace through recovery from substance use and breaking a years-long cycle of homelessness and incarceration, she wanted to find ways to help her communities.

She became a case manager and learned about the health disparities and discrimination faced by LGBT communities, issues she, too, had experienced throughout her life.

She took every route she could think of to deliver resources and support: going into prisons, working through her recovery community and through churches—or trying to—and earning a master’s degree with honors in social work. She founded a support group for women of trans experience in New Haven, Connecticut, and coordinates the Aging Positively program at her agency. But it was LWS that first acknowledged the work she had been doing for over a decade.

“Being an honoree and being inducted was one of the highlights of my whole journey,” she says. “Not until I got into the sisterhood is when I clearly heard ‘Thank you’! It made it ever so worthwhile to continue to do the work.”

Similarly, Kim Canady-Griffith didn’t even realize she was looking for this kind of supportive network until she found it in LWS. “That’s always been my goal, to link up with other women who were doing the work,” she says, “not just solely focused on HIV but the intersections.”

Canady-Griffith was born with HIV. Her first experience of being in community with other women living with HIV was the support group at a clinic when she was a teenager. She has been involved with youth programs and advocacy ever since.

Canady-Griffith says she was raised by a grandmother who was a pastor and has two older sisters who are social workers. With that background, she says, community work came naturally. She has always worked with teens. The depression, rebellion and trauma of her own youth inform the education and training work that she has done with young people for more than half her life, around all aspects of sexuality, including healthy relationships.

A friend who was part of LWS told her about it and nominated her in 2019. “I didn’t realize so many women that I know and that I’ve worked with at different events are actually inducted,” she remarks. “It kind of feels like a secret society.” For her, it’s been refreshing to see that “there are other women who are trying to uplift you and want you to succeed and not tear you down.”

“RJ is still required, because if we don’t keep it on the table, then [decision makers] forget that we exist,” says Lisa Diane White, SisterLove’s deputy director. She came to SisterLove through NBWHP, as a volunteer outreach worker and facilitator of a self-help group for women with HIV. “They forget that the world is not white men only.…

People move through the world by the people that they see, and if they don’t see us, then they won’t think about us.”

This fact became apparent again in October 2019 when the drug Descovy was newly approved by the Food and Drug Administration (FDA) for HIV prevention through sex, excluding those who have receptive vaginal sex. Cisgender women and transgender men—whose HIV vulnerability is already largely misunderstood and ignored—were excluded from the clinical trials that confirmed Descovy as the second drug that people can use to remain HIV negative.

SisterLove now helps drive the push to correct this oversight—just as the group fought against the CDC’s exclusion of health conditions affecting women in its definition of AIDS roughly 25 years ago. The group has also been a driving force for women in building the field of biomedical HIV prevention, including pre-exposure prophylaxis (PrEP), from the worldwide uphill battle for an effective microbicide to convening the U.S. Women and PrEP Working Group to inform the rollout of Truvada, the first PrEP drug, in the early 2010s.

Dixon Diallo spoke of this history of struggle for inclusion at the gala—before a representative from Gilead, the maker of Descovy and Truvada, read a statement from the company stating its intention to work with the FDA on “an innovative trial design to conduct a study evaluating PrEP medications in cisgender women and adolescent females.”

SisterLove will continue to hold Gilead—as well as other institutions—accountable to its promises. Never mind just a seat at the table, as Dixon Diallo coolly asserted from the stage, “We are setting the table.”

“I don’t have to be invited to a stage again,” comments Scruggs, regarding her decades of mentorship. “I have enough ladies out there [doing great work]. Leadership is also pushing up other people.” Likening those she has mentored to seeds, she says, “My fruit tree is full, and that feels incredible.”

LWS has become a nationwide network of dozens of women leaders with ready access to one another for support and growth. What comes next for this expanding circle? For many members of LWS, the power is in so many women sharing different versions of a common experience and different tactics to achieve a common goal.

“Being connected with SisterLove, I have people with like minds, that think like I do and want to help like I do,” says Ruff. “It’s more like a family.”

Canady-Griffith would like to see LWS become a collective voice in advocacy: “For all of us to say, [for example], ‘We want better health care,’ and we are the voices of it,” she says.

She agrees with Ruff on the importance of having a network of sisters: “It might not be the family you want, but it’s the family you need.” ■

poz.com MARCH 2020 POZ 35

HEROES

BY ALICIA GREEN

Still a Babe

36 POZ MARCH 2020 poz.com

Pat Migliore cofounded two groups for women with HIV.

TEGRA STONE NUESS

Pat Migliore remembers when most HIV support groups in Seattle were exclusively for men. She was never discouraged, though. If anything, it sparked her to find more women living with the virus.

“I really wanted to meet other women with HIV,” says Migliore, who tested positive in 1986 and still lives in Seattle. “Apparently, [Kass Anderton and Allison Hunter] did too, and we ended up finding each other.”

The three women connected over the phone, and the rest is history. Anderton hosted potlucks for women with the virus at her home; soon, the number of guests grew.

In 1989, the trio founded the BABES Network, a support program for women with HIV. The name was born out of a conversation about sex during which one woman said, “I was a babe before AIDS, and I’m still a babe,” Migliore recalls.

“We adopted the name because it really did signify who we were and what we talked about,” she says. “It was feeling that we were still ourselves, still worthwhile and still worthy of having relationships and care.”

Since the early ’90s, BABES has hosted retreats for women living with HIV. Earlier retreats included everyone, even those who were really sick. A nurse was always on-site because the goal was for these women to enjoy as much as they safely could.

BABES continues to operate today via a partnership with the YWCA and continues to organize retreats that are educational, fun and supportive.

Migliore hasn’t gone anywhere, either. She served on the BABES board for many years and runs a weekly support group on Thursdays.

In 2008, Migliore, along with 27 other women, helped cofound another HIV group for women living with HIV: the Positive Women’s Network– USA (PWN-USA).

“It became clear that other countries had PWNs, but that we didn’t have one,” says Migliore, currently the group’s board cochair. “We needed to do something so that we could have a national voice.”

One of Migliore’s most important tasks is to help develop PWN-USA’s strategy in order to create a road map for its staff. She also facilitates board meetings and sometimes shares the board’s perspective with the executive director.

Migliore hasn’t just connected women living with HIV to one another. She has also spent decades educating young people about HIV/AIDS. “I still have work to do,” she says. “There’s always a new crop of kids in schools and people who need to learn more about HIV.” Each September, Migliore can be found at the Seattle AIDS Walk, in which she has participated nearly every year since its 1986 launch. She walks in honor of her late husband, Bob, and others who have died of AIDS-related illnesses. “[Long-term survivors] need to be together sometimes so that we can remember the people who aren’t here anymore,” she says. “We are the ones who carry the stories. If we don’t carry them, they will disappear.”

3 WORDS EVERYONE SHOULD KNOW. PrEP

PEP

Undetectable

Pre-Exposure Prophylaxis: “Pre” means “before” and “Prophylaxis” means “prevention.” PrEP means taking prescription medicines every day before you are exposed to HIV to help reduce the risk of getting HIV. PrEP is for people who are HIV negative and are at risk of getting HIV through sex.

Post-Exposure Prophylaxis: “Post” means “after.” PEP means taking prescription medicines daily, immediately after being exposed to HIV, for 28 days to help reduce the risk of infection. You need to start taking it within 72 hours after exposure.

So go to a doctor or healthcare center right away.

If you have HIV, the goal is to get your viral load to undetectable. This means there’s so little virus in the blood that a test can’t measure it. There’s no cure, but getting to and staying undetectable can help reduce the risk of passing HIV through sex. How do you get to undetectable? By starting HIV treatment and taking it every day exactly as prescribed.

HIV INFORMATION MATTERS, TOO. Check out HelpStopTheVirus.com for more prevention information. And watch videos about HIV medicines, testing, and the importance of sticking to daily treatment.

5 Reasons to Stick to HIV Treatment

Testing Season

Fight Back With HIV Treatment

HelpStopTheVirus.com

Ask a healthcare provider about all the ways you can help prevent HIV. GILEAD and the GILEAD Logo are trademarks of Gilead Sciences, Inc. All other marks are the property of their respective owners. © 2019 Gilead Sciences, Inc. All rights reserved. UNBC6347 06/19

VOTE 2020 AS THE 2020 ELECTION NEARS, there is much at stake for people living with HIV and the communities most impacted by the epidemic. POZ and Positive Women’s Network–USA (PWN-USA) encourage everyone to get involved this election cycle and to cast their vote. Below are tips compiled from #PWNVotes Election Toolkit on how to effectively leverage your vote and engage your community this election year!

PART 1: PREPARE TO VOTE

Our community must be ready to vote before going to the polls! Here are some tips to make sure you and your folks are prepared for Election Day: 1. Find out the rules and requirements for voting in your state.

2. Register to vote!

3. Help others get registered to vote.

4. Make voting more accessible.

5. Know your rights!

6. Stay safe while voting. (Most states offer privacy programs to protect survivors of domestic violence.)

7. If you have questions about voting, get answers.

PART 2: DO YOUR RESEARCH

State and local elections can have a significant impact on whose interests are represented and how resources are distributed. Here are some ways to research the candidates and issues in your district: 1. Find out which candidates are running in your district.

2. Sign up for your local candidates’ newsletters.

3. Find info on candidates or sample ballots for elections taking place in your area.

4. Check out candidate profiles.

5. Learn how to assess candidates.

6. Find out how candidates and ballot measures will affect your community.

7. Engage with candidates at your local events.

4. Check out candidate profiles.

5. Learn how to assess candidates.

6. Find out how candidates and ballot measures will affect your community.

7. Engage with candidates at your local events.

PART 3: ELEVATE THE ISSUES

The election cycle is an invaluable opportunity to learn where candidates stand on the issues. Here are some strategies for engaging with candidates and elevating the issues that matter to you: 1. Invite candidates to your clinic, agency or organization.

2. Set up meetings with candidates.

3. Use questionnaires to assess candidates.

4. Attend candidate forums.

5. Go bird-dogging! (This tactic involves following a candidate and asking questions to get attention for your cause or issue.)

PART 4: GET OUT THE VOTE

The right to vote only matters if we exercise it! Showing up at the polls and encouraging others to do so are critical ways to use your voice during Election 2020. Here are ways to get out the vote: 1. Find out about early voting and voting by mail in your state.

2. Know where and when to go and what to bring with you on Election Day. 3. Volunteer as a poll worker.

4. Spread the word and encourage others to vote.

5. Know your rights.

6. Use a provisional ballot if necessary.

7. Be ready to address any problems or questions that arise on Election Day.

PART 5: ORGANIZE FOR POWER

POZ and PWN-USA are committed to making sure the voices, perspectives and priorities of people living with HIV are represented during the 2020 election cycle. For links to resources and additional information, visit poz.com/vote or pwn-usa.org/pwnvotes/.

Source: Adapted with permission from #PWNVotes Election Toolkit.

3 WORDS EVERYONE SHOUL

IT STARTS WITH

KNOWING YOUR STATUS. The only way to know your status is to get tested for HIV.

IF YOUR RESULT IS POSITIVE . . .

IF YOUR RESULT IS NEGATIVE . . .

It’s okay to feel overwhelmed or confused.

But HIV treatments can help people live longer, healthier lives. Talk to a healthcare provider as soon as possible after diagnosis. There’s no cure for HIV, but by starting, sticking to, and staying on daily treatment, HIV can be a manageable disease for many people.

There are things you can do to stay that way. Use condoms, get retested regularly, and talk to a healthcare provider about HIV prevention medicines for PEP (Post-exposure Prophylaxis) and PrEP (Pre-Exposure Prophylaxis).

PrEP

PEP

Pre-Exposure Prophylaxis: “Pre” means “before” and “Prophylaxis” means “prevention.” PrEP means taking prescription medicines every day before you are exposed to HIV to help reduce the risk of getting HIV. PrEP is for people who are HIV negative and are at risk of getting HIV through sex.

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HIV TREATMENT HELPS PROTECT EVERYONE.

HIV INFORMATION MATTERS

Starting and sticking to HIV treatment can lower the amount of virus in the body to undetectable. According to current research, starting and sticking to treatment every day can help you get to and stay undetectable, which means there’s effectively no risk of spreading HIV through sex. It’s called Treatment as Prevention, or TasP. So, HIV treatment can help protect everyone, positive and negative.

Check out HelpStopTheVirus.com for more p about HIV medicines, testing, and the impor

5 Reasons to Stick to HIV Treatment

Testing S

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Undetectable If you have HIV, the goal is to get your viral load to undetectable. This means there’s so little virus in the blood that a test can’t measure it. There’s no cure, but getting to and staying undetectable can help reduce the risk of passing HIV through sex. How do you get to undetectable? By starting HIV treatment and taking it every day exactly as prescribed.

I AM LIVING WITH HIV.

I AM HIV NEGATIVE.

YES!

S, TOO.

prevention information. And watch videos rtance of sticking to daily treatment.

Season

SHOULD HIV PREVENTION MATTER TO ME?

PREVENTION MATTERS TO EVERYONE. See how we can all help stop the virus in our bodies and communities.

Fight Back With HIV Treatment

eVirus.com

ovider about all the elp prevent HIV.

emarks of Gilead Sciences, Inc. All other marks are the property of Sciences, Inc. All rights reserved. UNBC6347 06/19