POZ Focus Your Health Matters 2015

FOCUS

Gina Brown

Your Health Matters CREDIT TK HERE

A guide to advocating for your care and treatment

Supplement to POZ magazine

www.2016usca.org

CONTENTS 5 FROM THE EDITOR Why your health matters 6 FIERCE FACTOR Gina Brown shares how she learned to advocate for herself.

9 BROWN’S TIPS Advice on getting more out of your health care 9 FINDING SUPPORT Five types of support networks to help you survive and thrive 10 TALKING TREATMENT How to make the most out of your discussions with your doctor

(COVER) DAYMON GARDNER; (GUTIERREZ) JOAN LOBIS BROWN

12 SPEAK UP! Six advocates offer advice on speaking up for yourself.

13 YOUR HEALTH LOG A handy checklist for your next doctor visit

For more info on HIV, visit

POZ.com

Express Yourself Living with HIV—no matter whether you’ve just been diagnosed or you’re a long-term survivor—is a challenge. Some of us take complicated treatments and deal with serious side effects, but most of us now have simple regimens with few, if any, side effects.

The challenges most of us face these days have more to do with access to care and adherence, as well as stigma and discrimination, which seem as pervasive as ever.

These current challenges may not be as immediate as the life-and-death choices people living with HIV/AIDS faced at the beginning of the epidemic, but they’re no less important in the long run for our health and wellness. Unfortunately, these challenges can still feel overwhelming for too many of us. I certainly remember feeling helpless when I tested HIV positive in 1992, which was four years before effective treatment.

Slowly but surely I found the strength to advocate for my own care and treatment.

Much of why I was able to do that was finding accurate information—from POZ and other sources—to help me along my way. We hope this POZ Focus special issue will serve as such a guide for you to advocate for your own care and treatment.

Our cover gal, Gina Brown, is a great example of someone who learned how to advocate for herself. Brown was so inspired by what she learned that she now dedicates herself to helping others advocate for themselves. Looking at her roles at the New Orleans Regional AIDS Planning Council, the Positive Women’s Network (their logo is on her T-shirt!) and the Presidential Advisory Council on HIV/AIDS, you wouldn’t believe she once didn’t know how to advocate for herself. Go to page 6 to read her story.

Getting educated about your options for care and treatment is just one component of looking out for yourself. Learning how to have open discussions with your health care providers is crucial, especially when it comes to your treatment. Topics such as adherence, side effects, interactions and contraindications are things you shouldn’t ignore. Go to page 10 for advice on how to talk about treatment.

You’ll find Brown’s tips on getting more out of your health care on page 9, and please go to page 12 to read advice from six other advocates on speaking up for yourself. Last but not least, please also go to page 13 for a checklist of things to remember for your next doctor visit.

ORIOL R. GUTIERREZ JR. EDITOR-IN-CHIEF POZ.COM FACEBOOK.COM/POZMAGAZINE TWITTER.COM/POZMAGAZINE

Published by Smart + Strong, publishers of POZ and POZ.com.

Copyright © 2015 CDM Publishing, LLC. All rights reserved. No part of this publication may be reproduced, stored or transmitted, in any form by any means, electronic, mechanical, photocopying, recording or otherwise, without the written permission of the publisher.

Send feedback to POZ Focus c/o Smart + Strong, 462 Seventh Avenue, 19th Floor, New York, NY 10018. Tel: 212.242.2163; POZ.com.

Editor-in-Chief: Oriol R. Gutierrez Jr. Managing Editor: Jennifer Morton Deputy Editor: Trenton Straube Copy Editor: Meave Gallagher Art Director: Mark Robinson Production Manager: Michael Halliday

SMART + STRONG President: Ian E. Anderson EVP and Publisher: Susan S. Levey Integrated Advertising Coordinator: Jonathan Gaskell

POZ Focus is independently produced by Smart + Strong.

YOUR HEALTH MATTERS POZ FOCUS 5

Over the years, Gina Brown learned how to get the information she needed—and learned to speak up for herself.

FIERCE FACTOR How one woman living with HIV learned to get her needs met

DAYMON GARDNER

By Tim Murphy

alking to Gina Brown, you’d never believe she once didn’t know how to advocate for herself.

Today, this funny, smart 49-year-old training coordinator for the New Orleans Regional AIDS Planning Council spends her days setting up programs to help other folks living with HIV do things like build résumés so they can get back to work. She’s also on the Presidential Advisory Council on HIV/AIDS, where she works on such issues as treatment for those coinfected with HIV and hepatitis C, and preventing HIV infection among young gay men of color, who have the highest rates of HIV in the country.

Brown is also on the board of Positive Women’s Network (PWN-USA), which inspires, informs and mobilizes women living with HIV to advocate for changes that improve their lives.

If that wasn’t enough, Brown is also starting a mentoring and careerdeveloping nonprofit called Build Your Dreams for girls and young

women in the city’s economically challenged Lower Ninth Ward. “I want to start it because I see the social determinants that drive the HIV epidemic, like poverty, lack of education and crime rates, all the time,” says Brown, who since her 1994 HIV diagnosis has earned both her bachelor’s and her master’s in social work. “If I’d been exposed to mentorship as a young girl in New Orleans, it would have made a difference in my life.”

Obviously, Brown knows how to get what she needs. But it wasn’t always that way. In 1994, pregnant with her first child, she learned she was HIV positive. (She assumes she got the virus during a prior period as a crack user who traded sex for money or from the father of her two children, who she didn’t learn was HIV positive until after his death in 1997.) She got the news at the city’s Charity Hospital, which closed after Hurricane Katrina. “A nurse told me that I had AIDS and was going to die,” Brown recalls. “She was a nurse, so I thought, ‘She knows.’ I cried and cried and thought, ‘I’m gonna kill myself.’ I didn’t even know women

could get HIV. I hadn’t heard about Mary Fisher or Elizabeth Glaser,” she says, referring to two prominent activists at the time who had gone public with their HIV status.

Yet in a way, Brown’s self-advocacy started at that very moment: by expressing what she felt in her heart. “I told another nurse that I was going to kill myself,” she recalls, “and she said, ‘No way,’ and called another nurse, who grabbed my hand. I snatched it away, saying, ‘I have AIDS!’ And she said, ‘You have HIV. We don’t know if you have AIDS until we measure your T cells. Do you want to come and talk?’

So she took me into a conference room and said, ‘If you do these three things, you’re going be fine: Attend all doctor appointments, take your medication exactly as prescribed and learn everything you can about this virus.’ I do those three things to this day and I’m still alive!”

That nurse, Margot Perrin, became

a lifeline for Brown through her pregnancy, during which she took the drug AZT to prevent passing HIV to

YOUR HEALTH MATTERS POZ FOCUS 7

her child. “My self-esteem at the time was so low, so I latched on to Margot because she gave me hope,” Brown says. “I could call her with any question, no matter how stupid I thought it was. I thought I had to use gloves with my baby and she said no. She told me that my baby and I could bathe together. I didn’t even know how HIV was spread. I thought it was through all body fluids, like tears and sweat—not just blood, semen and breast milk.”

Slowly but surely, Brown was learning how to get information she needed—and to speak up for herself.

would call out people’s full names in the waiting room, again compromising confidentiality. “In New Orleans, we don’t have six degrees of separation, we have one or two,” she explains. “It was so disrespectful.” She complained, and the clinic stopped using last names. Yet she also quickly got over the shame about her own HIV diagnosis. “People would hang out by the entrance to the clinic to see who was positive,” she recalls. “At first I wanted to die, but then I thought, the heck with them, and I’d be like, ‘Hey, how y’all doing!’ on my way in.”

Brown’s advocacy has given her the health and stability to simply enjoy her life like anyone else.

When she returned to Charity to give birth, she was infuriated to see that hospital staffers were whispering over her chart in front of her. “They were saying, ‘What a waste,’ spreading the word on the ward that I had HIV, even to the housekeeper,” recalls Brown, anger still in her voice. “I was furious, and I told Margot everything.

I didn’t even feel ashamed at that point. I thought, ‘This is how you treat me? How would they treat someone who didn’t speak up?’”

Brown’s vocal anger led to the

hospital having a special training session where HIV experts brought the entire staff up to date about facts versus myths—and about patient confidentiality. “Someone said she couldn’t believe women would get pregnant after learning they had HIV,” Brown says, “and Margot told them that most women don’t even find out they have HIV until they’re pregnant.

“So,” she says, “that was the start of my advocacy career—and I didn’t even know!”

And it didn’t stop there. Brown was angry that the HIV clinic at the hospital 8 POZ FOCUS YOUR HEALTH MATTERS

Perhaps most importantly, Brown developed a strong and open relationship with Jeanne Dumestre, APRN, who would be her nurse practitioner for the next 13 years. “I’ve never been embarrassed to ask her anything,” Brown says. “A guy I was dating wanted to know if we could have oral sex safely, so I asked her and she said, ‘I’d tell you to use a dental dam, but I don’t think you’d enjoy it as much,’” laughs Brown. (Research has found that oral sex poses low to no risk of HIV transmission.) Brown says Dumestre was also the first provider who took into account the fact that Brown had been molested as a child—research backs up her belief that this later drove her to trade sex for drugs. During an OB-GYN exam, “she’d explain everything to me beforehand,” Brown says.

Dumestre also helped Brown kick her longtime smoking habit. “She said, ‘Your Kools will kill you before HIV does.’” With the aid of the smokingcessation medication Chantix (varenicline), Brown was able to finally nix the butts in 2008.

Luckily, Brown has never had side effects with her HIV meds, which she

has changed over the years as easier-totake combos came out. But after quitting smoking, she started snacking compulsively and gained weight, which led to lower back pain as well as high blood pressure and high cholesterol. “I got addicted to Little Debbie snack cakes!” she says. So she joined an affordable gym with some girlfriends, started going three times a week and, eventually, dropped to 145 pounds and what she calls “a comfortable size 9.” (“I still love Doritos, though!” she says.)

Through all these years, Brown

has learned the importance of not only educating herself about her health but also speaking up with her providers— including Mary Murphy, MD, who has been her primary-care doctor since 2007. Because of a family history of colon cancer, Brown asked Murphy for a colonoscopy a few years ago. “She told me I didn’t need it until age 50, but I told her that if I got colon cancer before that, I was going to hurt her,” laughs Brown. “So she gave it to me.”

Similarly, when Murphy recently wanted to change her HIV meds, Brown asked, “Why? My current meds are working fine. If it’s not broke, don’t even try to fix it.” So she stayed on the same meds.

The best thing about Brown’s selfadvocacy? It’s given her the health and stability to simply enjoy the rest of her life like anyone else—and that’s a far cry from the scared woman who thought she was going to die back in 1994. She’s crazy about her two grandsons, Juan, 5, and Jajuan, 4. “We play basketball, watch cartoons, and cook and read together,” she says. “Our favorite book is The Velveteen Rabbit.”

On her own time, she devours books—most recently Stolen Women, a groundbreaking book about black women’s sexual health by Gail Wyatt, PhD, and the autobiography of Black Panther Assata Shakur. “I also love Stephen King!” she says. Plus, she’s got some major trips on her bucket list: as close as Puerto Rico but as far as Ethiopia—and Rome. “My daughter and I want to see the catacombs.”

We wager that they will. Gina Brown is a woman who knows how to get what she wants—and needs.

BROWN’S TIPS TO GET THE MOST OUT OF YOUR CARE REMEMBER THE THREE GOLDEN RULES.

1) Attend every doctor’s appointment; 2) take your meds exactly as prescribed; and 3) learn everything you can about this virus.

DON’T HIDE WHAT YOU’RE GOING THROUGH.

If you’re depressed, talk about it! Stop thinking everyone’s going to judge you. I used to call women on the day they were diagnosed with HIV so they’d have a shoulder to cry on. Hearing my story helped them realized they can still live a long life.

WRITE DOWN YOUR QUESTIONS.

Keep a daily health journal with what’s bothering you—diarrhea, headaches, etc. Then take it to your health care provider. And write down questions you have, plus things your provider tells you. Find out how to best communicate with your provider: Do they prefer e-mail or texting?

(BROWN) DAYMON GARDNER; (ILLUSTRATIONS) THINKSTOCK

DEMAND EXPLANATIONS FROM YOUR DOC.

If your doctor says, “Here, take this med,” and just walks away, ask him or her to explain the medication and why you should go on it. Polite persistence goes a long way. It’s your doctor’s job to make sure you understand the information you’re given.

BUILD A SUPPORT TEAM.

If you don’t like your doctor, you may not have many other choices —especially in rural areas—so seek out help elsewhere. (See sidebar, “Finding Support,” for tips on how to build your support network.)

The more help you have around you, the stronger you are.

Finding Support Dealing with HIV can be a challenge, but you don’t have to face it alone. In fact, creating a support network can make the difference between merely surviving with the virus and thriving with it. Not everyone has the same needs. Some folks seek info about meds and side effects; others want to chat about dating advice. Some prefer anonymity; others are loud and proud. That’s OK. Luckily, there are plenty of ways to find the care and support you need. Below are five different types of support networks that you can plug into for a healthy and happy life.

Health Care Team

Doctors, nurses and health care providers make up the front line of defense when it comes to understanding the medications and lab tests associated with HIV. Another excellent source of medical know-how is your local pharmacist. And therapists can help you deal with any mental health issues.

Case Managers / Social Workers

Need help filling out insurance paperwork or finding a program to help pay your rent? Don’t hesitate to ask these experts. They can help you wade through tedious tasks so you can focus on what’s important: your health.

Family, Friends & Community

A POZ Survey found that 56 percent of respondents relied on friends as their support network, and 41 percent counted on family members.

Church communities, co-workers and social groups may also offer you a way to connect with like-minded people.

Support Groups

Numerous support groups exist, for everyone from long-term HIV survivors to the newly diagnosed, and catering to groups such as alcoholics and gay men. Support groups can also vary by size. Why should you join one? The top three reasons, according to a recent POZ Survey, are 1) to be able to talk openly and honestly, 2) to feel less lonely and isolated, and 3) to seek out information.

Online Forums

If you can’t or don’t want to disclose your HIV status to your family and friends, or if you don’t feel comfortable in a support group (or if you can’t get to one), then visit the flourishing online HIV community, where you can ask questions, strike up conversations or just read other people’s posts.

Visit forums.poz.com to connect with others today.

YOUR HEALTH MATTERS POZ FOCUS 9

Talking Treatment An open discussion with your health care provider about your meds and treatment is crucial. Here are some tips to make the most of your conversation.

By Tim Murphy

10 POZ FOCUS YOUR HEALTH MATTERS

SIDE EFFECTS Many HIV drugs come with side effects, although most of the time they are not serious, and they often go away after a few weeks. Overall, the newer HIV drugs come with vastly fewer side effects than they did 10 or 20 years ago. When discussing starting or changing HIV meds with your provider, ask these questions: 1) What are the shortand long-term side effects of the drug? 2) Are you more likely to experience side effects because of other health issues, such as depression or high cholesterol? and 3) How can possible side effects be prevented or treated? “Every side-effects issue can be resolved as long as you

report them to your doc as soon as they occur,” Urbina says.

INTERACTIONS HIV meds can have bad interactions with other drugs, including other HIV meds, anti-cholesterol meds, antidepressants, supplements like St. John’s wort, and alcohol and recreational drugs like ecstasy or crystal meth. These interactions can cause drug levels to swing in your bloodstream, either dropping too low, which may increase your risk of resistance, or rising too high, which increases risk of toxicity. Thankfully, most of these interactions are well known. “That’s why it’s superimportant that you’re up front with

THINKSTOCK

Today we know for certain that starting HIV meds as soon as possible after diagnosis can boost health and prolong life. But whether you’re just starting meds, considering a switch or dealing with pesky side effects, the best tool on your side is open and honest dialogue with your health care provider. “It’s when both the doctor and the patient are totally up-front and open to each other’s concerns and priorities that we see the best long-term results,” says Antonio Urbina, MD, medical director for HIV/AIDS Education and Training at New York City’s Mt. Sinai Hospital. So when talking about treatment, keep in mind the following:

your doctor about any other drugs you’re on, from prescribed ones to over-the-counter ones to alcohol, pot or party drugs,” Urbina says. “We can’t help you unless we know everything you’re on, so don’t be ashamed to tell us anything. We can also help if you’re self-medicating other problems like depression, or if you’re addicted to something. But you have to be honest.”

CONTRAINDICATIONS Certain HIV meds are contraindicated, meaning that they should not be taken if you have other health issues. For example, you might not want to take Viread (tenofovir disoproxil fumarate, or TDF), which is in Truvada and Atripla, if you already have kidney problems.

And you might want to avoid Sustiva (efavirenz), which is also found in Atripla, if you have a history of severe depression. “Again,” Urbina says, “that’s why it’s so important that you’re completely up front about all your issues so that we can find the best HIV meds for you.”

ADHERENCE It’s important to take your medications on schedule as prescribed by your health care provider. If you miss your HIV meds often enough, the virus can develop resistance to them and they will lose their effectiveness. That’s another reason to be honest with your provider. If you can’t or won’t take your meds as prescribed, talk to your doc.

“We can work something out so that you’re getting good treatment you can deal with—as long as you’re honest with us,” Urbina says. Ask about ways to improve your adherence and check out the adherence tips at POZ.com.

SWITCHING MEDS Sometimes you might want to switch meds because you’re having trouble with the ones you’re on, or you hear that a new HIV drug has come out. Or your doctor might recommend that you switch because another option has a better long-term side-effect profile or is

easier to take. “Either way,” Urbina says, “let’s have an honest talk and ask each other why we want this switch and why this switch makes sense. Just because there’s a hot new med out, it may not be the best choice for you, especially if you’re happy with what you’re on.”

DOING YOUR HOMEWORK There’s so much information online

these days about HIV meds, and it changes all the time. Never assume that your doctor knows everything— and don’t be afraid to show your provider any information you found online. “If you’ve heard or read something you think might improve your treatment or your health, let us know,” Urbina says. “We can always talk it out and maybe make changes accordingly.”

Common Side Effects

Look out for these typical med meanies, and tell your provider about them at once. They’re seldom serious, often temporary—and almost always fixable.

NAUSEA, DIARRHEA, HEADACHE, STOMACH PAIN, LIGHTHEADEDNESS, FATIGUE, MALAISE (FEELING CRUMMY) These are among the most common side effects for all meds, and they often go away within weeks of starting a new regimen. But be sure to tell your provider about them.

Many over-the-counter drugs can treat or prevent these side effects, and of course you can discuss switching HIV meds if they persist.

INSOMNIA, DEPRESSION, FEELING HIGH, MOOD CHANGES, WEIRD OR VIVID DREAMS Some HIV meds—especially Sustiva, which is also in Atripla—can cause these side effects, which often go away after a few weeks. One trick is to take your meds before bedtime.

Either way, tell your provider about them—especially if they are severe or you feel like killing or hurting yourself or others.

RASHES These are usually not serious and go away. But tell your doctor, especially if accompanied by fever, sore throat or belly pain. Some rashes can be serious and signal that you need to stop taking the drug immediately.

HIGH CHOLESTEROL This has been associated with the class of HIV meds called protease

inhibitors. Your provider should check your cholesterol regularly— if it’s high, you and your doctor can talk about going on anti-cholesterol drugs called statins or perhaps changing your HIV meds.

LIVER AND KIDNEY FUNCTION Your doctor should check both your liver and kidneys regularly via basic tests. Some HIV meds have been associated with long-term adverse affects, so you may want to consider switching regimens if you’re at risk.

CHANGES IN BODY SHAPE Over a decade ago, certain HIV medications, including protease inhibitors, were associated with the visible addition or loss of fat in the cheeks, belly, arms and legs.

This has dramatically decreased with the emergence of newer HIV meds, but if your body is changing shape in any way, be sure to let your doctor know.

WEAKER BONES The HIV med Viread (tenofovir

disoproxil fumarate, or TDF), which is found in Truvada, Atripla, Complera and Stribild, has been linked to low levels of bone-density in a very small number of takers. If you are already at risk for bonedensity loss, you might want to ask your doctor to test your bone density every five years or so.

YOUR HEALTH MATTERS POZ FOCUS 11

Speak Up for Yourself (You’re Worth It!) People living with HIV offer advice on advocating for your health.

“Take control of HIV; don’t let HIV take control of you.

There is life after an HIV diagnosis.

Seek treatment and live it.”

Mechelle Jones

New York City Positive since 1995

Byanca Parker

Dallas, Texas Positive since 1993

“In the beginning I was very scared.

It was hard; there wasn’t anyone I could talk to. But I became more knowledgeable about HIV and things really started to change.”

Andrew Ballard

Alexander City, Alabama Positive since 2003

12 POZ FOCUS YOUR HEALTH MATTERS

“I advocate for what I need because I am supposed to have it. I deserve it.”

“It’s so important to be an advocate in your own health care and arm yourself with information. If you don't understand something, ask questions until you do.”

Suzan Meredith

Louisville, Kentucky Positive since late ’80s

“Once I became empowered, I began to make better decisions regarding my treatment. I asked my doctors the hard questions; I did my own research and decided to take ownership of my disease and how it affects me.”

Guy Anthony

Washington, DC Positive since 2005

(PARKER) WADE GRIFFITH; (JONES) GRANT DELIN; (BALLARD) STEPHEN DEVRIES; (ANTHONY) COURTESY OF AIDS.GOV/PROJECT SPIN; (MCPHERSON & MEREDITH) COURTESY OF INDIVIDUALS

“Know your body.

It’s important to get educated not just about HIV, but health in general.”

Marcus McPherson

Crystal Springs, Mississippi Positive since 2012

Your Health Log Use this handy checklist to kick-start a conversation with your doctor.

Since My Last Visit…

__________________________________________________________

Use this section to keep track of any changes since your last doctor’s visit.

__________________________________________________________

Did I experience any of the following?

__________________________________________________________

❑ Fatigue

__________________________________________________________

❑ Changes in bowel or bladder activity

__________________________________________________________

❑ Bruising or bleeding ❑ Rashes or hives

Here are some sample questions:

❑ Nausea or dizziness ❑ Changes in appetite

Are there are any lifestyle changes I should make in order to stay healthy?

❑ Vomiting

What side effects can I expect from this medication?

❑ Diarrhea ❑ Changes in sex drive ❑ Other side effects Did I engage in any sexual behavior since my last visit that might have put me at risk of contracting any other sexually transmitted infections or hepatitis C? Were there any major changes to my diet?

Did I start taking any new vitamins or supplements?

What can I do to deal with these side effects?

How can I protect others from getting infected?

What do my lab tests mean?

Is there any additional lab work that I need to have done?

Are there any advances in treatment I should know about?

Did I travel to another country, or do I plan to?

Keeping Track

Did I miss any doses of my HIV medication?

Use this section to keep track of important numbers and key indicators of your risk for serious illness.

Were there any other changes in my life or lifestyle?

(If you answered yes to any of the above questions, be sure to discuss the topics with your doctor.)

My CD4 cell count is ___________ Since my last visit, it has: ❏ Increased ❏ Decreased ❏ Stayed about the same

Questions for Your Doc

My viral load is ___________

Before your next appointment, use this section to jot down any questions you may have for your doctor.

Since my last visit, it has: ❏ Increased ❏ Decreased ❏ Stayed about the same

__________________________________________________________ __________________________________________________________ __________________________________________________________ __________________________________________________________ __________________________________________________________ __________________________________________________________ __________________________________________________________ CREDIT TK HERE THINKSTOCK

__________________________________________________________

__________________________________________________________ __________________________________________________________

My blood pressure is ___________ Since my last visit, it has: ❏ Increased ❏ Decreased ❏ Stayed about the same My cholesterol (HDL/LDL) is ___________ Since my last visit, it has: ❏ Increased ❏ Decreased ❏ Stayed about the same My blood sugar (glucose) level is ___________ Since my last visit, it has: ❏ Increased ❏ Decreased ❏ Stayed about the same

YOUR HEALTH MATTERS POZ FOCUS 3