Page 1

CO M M E M O R AT I N G

25

YEARS

Embracing the age of wisdom Keeping your Brain Sharp Brightening the Blues

POSITIVELY AWARE WINTER 2013/2014

By 2015, over half of all people living with HIV in the U.S. —roughly half a million—will be over age 50.

THE 50+ ISSUE OLDER+FABULOUS


CO M M EM O R ATI N G

25

YEARS

Introducing the new

POSITIVELY AWARE WEEKLY POSITIVELY AWARE JOURNALISM. INTEGRITY. HOPE.

Stay on top of the latest HIV news and treatment developments with POSITIVELY AWARE WEEKLY, the email newsletter from PA.

Tim Murphy Guest Editor

Jeff Berry editor- in - Chief

Enid Vázquez a s s o c i at e e d i t o r

Sue Saltmarsh copy Editor

Jason Lancaster proofreader

Joshua Thorne Web Master

Rick Guasco C r e at i v e d i r e c t o r contributing writers

Sal Iacopelli Laura Jones Jim Pickett Andrew Reynolds Matt Sharp photogr aphers

Chris Knight Joshua Thorne I l l u s t r at i o n s

A.E. Kieren

adve rtising inq u irie s

Lorraine Hayes l.hayes@tpan.com Subscription services

Shelby Pollard distribution@tpan.com

POSITIVELY AWARE IS PUBLISHED BY

5050 N. Broadway St. SUITE 300 Chicago, IL 60640-3016 phone: (773) 989–9400 fax : (773) 989–9494 email : inbox@tpan.com www.positivelyaware.com

Subscribe now: positivelyaware.com/subscribe We accept contribution of articles covering medical or personal aspects of HIV/AIDS. We reserve the right to edit or decline submitted articles. When published, the articles become the property of TPAN and its assigns. You may use your actual name or a pseudonym for publication, but please include your name and phone number. Although Positively Aware takes great care to ensure the accuracy of all the information that it presents, Positively Aware staff and volunteers, TPAN, or the institutions and personnel who provide us with information cannot be held responsible for any damages, direct or consequential, that arise from use of this material or due to errors contained herein. Opinions expressed in Positively Aware are not necessarily those of staff or TPAN, its supporters and sponsors, or distributing agencies. Information, resources, and advertising in Positively Aware do not constitute endorsement or recommendation of any medical treatment or product. TPAN recommends that all medical treatments or products be discussed thoroughly and frankly with a licensed and fully HIV-informed medical practitioner, preferably a personal physician. A model, photographer, or author’s HIV status should not be assumed based on their appearance in Positively Aware, association with TPAN, or contributions to this journal.


The 50+ ISSUE V O LU M E 2 6

NUMBER 2

OLDER+FABULOUS

More than surviving —thriving Longtime survivor Perry Halkitis weighs in.

Fighting the fire

Caring for the inside

No brittle bones

Nelson Vergel tells how to keep inflammation in check.

Nancy Santiago knows that sometimes, what’s inside really does matter most.

Stephanie Brooks-Wiggins shares insights on bone health.

8

6

12

10

Conquering cancer

Keeping your brain sharp

Brightening the blues

Nurturing your spirit

Shirlene Cooper has defeated cancer—multiple times!

Jane Fowler provides clues on keeping an agile brain.

Phill Wilson doesn’t let depression hold him back.

Charlene Arcila offers advice on tending to the whole you.

14

50+ and fabulous

16

Guest editor Tim Murphy notes that aging with HIV comes with its own challenges.

18

Everybody says... Familiar advice.

23

5

ABOUT THE ILLUSTRATOR A.E. Kieren is a freelance illustrator, graphic designer, and performer. He holds a BFA in Illustration from THE College for Creative Studies in Detroit, and an MFA in Illustration as Visual Essay from the School of Visual Arts in New York City.

20

Embracing the age of wisdom You’ve made it this far— show others the way!

25

ON THE COVER Tom Menard, age 55, diagnosed with HIV in 1991, photographed by Chris Knight. POSITIVELY AWARE wi nter 2 013/2 014 1


Individual with HIV

ment options. out my HIV treat ab e or m rn lea chose I was ready to essional and we y healthcare prof m to e uld ok sp I So . He told me it co my HIV regimen of rt pa as S ES ISENTR s and lifest yle. may fit my need fight my HIV and next. r what comes I’m excited fo


In a clinical study lasting more than 4 years (240 weeks), patients being treated with HIV medication for the first time demonstrated that ISENTRESS速 (raltegravir) plus Truvada 速 (emtricitabine/tenofovir

disoproxil fumarate):

INDICATION ISENTRESS is a prescription HIV-1 medicine used with other HIV medicines to treat adults with human immunodeficiency virus (HIV-1) infection. HIV is the virus that causes AIDS (Acquired Immune Deficiency Syndrome). The use of other medicines active against HIV-1 in combination with ISENTRESS may increase your ability to fight HIV. ISENTRESS does not cure HIV infection or AIDS. Patients must stay on continuous HIV therapy to control infection and decrease HIV-related illnesses. IMPORTANT RISK INFORMATION Severe, potentially lifethreatening, and fatal skin reactions and allergic reactions have been reported in some patients taking ISENTRESS. If you develop a rash with any of the following symptoms, stop using ISENTRESS and contact your doctor right away: fever, generally ill feeling, extreme tiredness, muscle or joint aches, blisters or sores in mouth, blisters or peeling of skin, redness or swelling of the eyes, swelling of the mouth or face, problems breathing. Sometimes allergic reactions can affect body organs, like the liver. Contact your doctor right away if you have any of the following signs or symptoms of liver problems: yellowing of the skin or whites of the eyes, dark or tea-colored urine, pale-colored stools/bowel movements, nausea/vomiting,

May reduce viral load to undetectable (less than 50 copies/mL) May significantly increase CD4 cell counts ISENTRESS may not have these effects on all patients Patients had a low rate of these moderate-to-severe common side effects (that interfered with or kept patients from performing daily activities): trouble sleeping (4%), headache (4%), nausea (3%), dizziness (2%), and tiredness (2%).

loss of appetite, pain, aching or tenderness on the right side below the ribs. Changes in your immune system (Immune Reconstitution Syndrome) can happen when you start taking HIV medicines. Your immune system may get stronger and begin to fight infections that have been hidden in your body for a long time. Tell your doctor right away if you start having new symptoms after starting your HIV medicine. People taking ISENTRESS may still develop infections or other conditions associated with HIV infections. The most common side effects of ISENTRESS include: dizziness, headache, nausea, tiredness and trouble sleeping. Less common side effects include: allergic reaction, depression, hepatitis, genital herpes, herpes zoster including shingles, kidney failure, kidney stones, stomach pain, suicidal thoughts and actions, vomiting and weakness. Tell your doctor before beginning ISENTRESS if you have a history of muscle disorders (rhabdomyolysis or myopathy) or increased creatine kinase or if you are taking medications known to cause these conditions such as statins, fenofibrate, gemfibrozil or zidovudine. Tell your doctor right away if you get unexplained muscle pain, tenderness, or weakness while taking ISENTRESS. This may be a sign of a rare but serious muscle problem that can lead to kidney problems.

Rash occurred more often in patients taking ISENTRESS and darunavir/ritonavir (Prezista 速) together, than with either drug separately, but was generally mild. These are not all the possible side effects of ISENTRESS. For more information, ask your doctor or pharmacist. Tell your doctor if you have any side effect that bothers you or that does not go away. Tell your doctor about all your medical conditions, including if you have any allergies, are pregnant or plan to become pregnant, or are breastfeeding or plan to breastfeed. ISENTRESS is not recommended for use during pregnancy. Women with HIV should not breastfeed because their babies could be infected with HIV through their breast milk. Tell your doctor about all the medicines you take, including: prescription medicines like rifampin (a medicine commonly used to treat tuberculosis), non-prescription medicines, vitamins, and herbal supplements. Especially tell your doctor if you take antacids, as certain antacids (those containing aluminum and/or magnesium) are not recommended to be taken with ISENTRESS. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call FDA at 1-800-FDA-1088. Please read the Patient Information on the adjacent page for more detailed information.

Need help paying for ISENTRESS? Call 1-866-350-9232 Talk to your healthcare professional about ISENTRESS and visit isentress.com. Brands mentioned are the trademarks of their respective owners. Copyright 息 2013 Merck Sharp & Dohme Corp., a subsidiary of Merck & Co., Inc. All rights reserved. INFC-1049069-0011 11/13


Patient Information ISENTRESS ® (eye sen tris) (raltegravir) Film-Coated Tablets Read this Patient Information before you start taking ISENTRESS and each time you get a refill. There may be new information. This information does not take the place of talking with your doctor about your medical condition or your treatment. What is ISENTRESS? ISENTRESS is a prescription HIV medicine used with other HIV medicines to treat adults with human immunodeficiency virus (HIV-1) infection. HIV is the virus that causes AIDS (Acquired Immune Deficiency Syndrome). When used with other HIV medicines, ISENTRESS may reduce the amount of HIV in your blood (called “viral load”). ISENTRESS may also help to increase the number of CD4 (T) cells in your blood which help fight off other infections. Reducing the amount of HIV and increasing the CD4 (T) cell count may improve your immune system. This may reduce your risk of death or infections that can happen when your immune system is weak (opportunistic infections). ISENTRESS does not cure HIV infection or AIDS. People taking ISENTRESS may still develop infections or other conditions associated with HIV infection. Some of these conditions are pneumonia, herpes virus infections, and Mycobacterium avium complex (MAC) infections. Patients must stay on continuous HIV therapy to control infection and decrease HIV-related illnesses. Avoid doing things that can spread HIV-1 infection to others: • Do not share needles or other injection equipment. • Do not share personal items that can have blood or body fluids on them, like toothbrushes and razor blades. • Do not have any kind of sex without protection. Always practice safe sex by using a latex or polyurethane condom to lower the chance of sexual contact with semen, vaginal secretions, or blood. Ask your doctor if you have any questions on how to prevent passing HIV to other people. What should I tell my doctor before taking ISENTRESS? Before taking ISENTRESS, tell your doctor if you: • have liver problems. • have any other medical conditions. • take antacids. Certain antacids (those containing aluminum and/or magnesium) are not recommended with ISENTRESS. • are pregnant or plan to become pregnant. It is not known if ISENTRESS can harm your unborn baby. Pregnancy Registry: You and your doctor will need to decide if taking ISENTRESS is right for you. If you take ISENTRESS while you are pregnant, talk to your doctor about how you can be included in the Antiretroviral Pregnancy Registry. The purpose of the registry is to follow the health of you and your baby. • are breastfeeding or plan to breastfeed. - Do not breastfeed if you are taking ISENTRESS. You should not breastfeed if you have HIV because of the risk of passing HIV to your baby. - Talk with your doctor about the best way to feed your baby. Tell your doctor about all the medicines you take, including: prescription and nonprescription medicines, vitamins, and herbal supplements. Taking ISENTRESS and certain other medicines may affect each other causing serious side effects. ISENTRESS may affect the way other medicines work and other medicines may affect how ISENTRESS works. Especially tell your doctor if you take: • antacids. It is not recommended to take ISENTRESS with certain antacids (those containing aluminum and/or magnesium). Talk to your doctor about other antacids you can take. • rifampin (Rifadin, Rifamate, Rifater, Rimactane), a medicine commonly used to treat tuberculosis. Ask your doctor or pharmacist if you are not sure whether any of your medicines are included in the list above. Know the medicines you take. Keep a list of them to show your doctor and pharmacist when you get a new medicine. Do not start any new medicines while you are taking ISENTRESS without first talking with your doctor. How should I take ISENTRESS? • Take ISENTRESS exactly as prescribed by your doctor. • You should stay under the care of your doctor while taking ISENTRESS. • Do not change your dose of ISENTRESS or stop your treatment without talking with your doctor first. • Take ISENTRESS by mouth, with or without food. • ISENTRESS Film-Coated Tablets must be swallowed whole. • If you miss a dose, take it as soon as you remember. If you do not remember until it is time for your next dose, skip the missed dose and go back to your regular schedule. Do not double your next dose or take more than your prescribed dose. • If you take too much ISENTRESS, call your doctor or go to the nearest emergency room right away. • Do not run out of ISENTRESS. Get your ISENTRESS refilled from your doctor or pharmacy before you run out. What are the possible side effects of ISENTRESS? ISENTRESS can cause serious side effects including: • Serious skin reactions and allergic reactions. Severe, potentially life-threatening and fatal skin reactions and allergic reactions have been reported in some patients taking ISENTRESS. If you develop a rash with any of the following symptoms, stop using ISENTRESS and contact your doctor right away: ° fever ° muscle or joint aches ° redness or swelling of the eyes ° generally ill feeling ° blisters or sores in mouth ° swelling of the mouth or face extreme tiredness blisters or peeling of the skin ° ° ° problems breathing

Sometimes allergic reactions can affect body organs, like the liver. Contact your doctor right away if you have any of the following signs or symptoms of liver problems: ° yellowing of the skin or whites of the eyes ° dark or tea colored urine ° pale colored stools/bowel movements ° nausea/vomiting ° loss of appetite ° pain, aching or tenderness on the right side below the ribs • Changes in your immune system (Immune Reconstitution Syndrome) can happen when you start taking HIV medicines. Your immune system may get stronger and begin to fight infections that have been hidden in your body for a long time. Tell your doctor right away if you start having new symptoms after starting your HIV medicine. The most common side effects of ISENTRESS include: • dizziness • tiredness • headache • trouble sleeping • nausea Less common side effects include: • allergic reaction • kidney failure • depression • kidney stones • genital herpes • stomach pain • hepatitis • suicidal thoughts and actions • herpes zoster • vomiting including shingles • weakness Tell your doctor before beginning ISENTRESS if you have a history of muscle disorders (rhabdomyolysis or myopathy) or increased creatine kinase or if you are taking medications known to cause these conditions such as statins, fenofibrate, gemfibrozil or zidovudine. Tell your doctor right away if you get unexplained muscle pain, tenderness, or weakness while taking ISENTRESS. This may be a sign of a rare but serious muscle problem that can lead to kidney problems. Rash occurred more often in patients taking ISENTRESS and darunavir/ritonavir together than with either drug separately, but was generally mild. Tell your doctor if you have any side effect that bothers you or that does not go away. These are not all the possible side effects of ISENTRESS. For more information, ask your doctor or pharmacist. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088. How should I store ISENTRESS? Film-Coated Tablets: • Store ISENTRESS Film-Coated Tablets at room temperature between 68°F to 77°F (20°C to 25°C). Keep ISENTRESS and all medicines out of the reach of children. General information about ISENTRESS Medicines are sometimes prescribed for conditions that are not mentioned in Patient Information Leaflets. Do not use ISENTRESS for a condition for which it was not prescribed. Do not give ISENTRESS to other people, even if they have the same symptoms you have. It may harm them. This leaflet gives you the most important information about ISENTRESS. If you would like to know more, talk with your doctor. You can ask your doctor or pharmacist for information about ISENTRESS that is written for health professionals. For more information go to www.ISENTRESS.com or call 1-800-622-4477. What are the ingredients in ISENTRESS? ISENTRESS Film-Coated Tablets: Active ingredient: raltegravir Inactive ingredients: microcrystalline cellulose, lactose monohydrate, calcium phosphate dibasic anhydrous, hypromellose 2208, poloxamer 407 (contains 0.01% butylated hydroxytoluene as antioxidant), sodium stearyl fumarate, magnesium stearate. The film coating contains: polyvinyl alcohol, titanium dioxide, polyethylene glycol 3350, talc, red iron oxide and black iron oxide. This Patient Information has been approved by the U.S. Food and Drug Administration. Distributed by: Merck Sharp & Dohme Corp., a subsidiary of Merck & Co., Inc. Whitehouse Station, NJ 08889, USA Revised November 2013 USPPI-0518-T-1310R024 Copyright © 2007, 2009, 2011 Merck Sharp & Dohme Corp., a subsidiary of Merck & Co., Inc. All rights reserved. INFC-1049069-0011 11/13 U.S. Patent Nos. US 7,169,780


G u est E d itor ’ s note

|

Tim Murphy

Tim Murphy has been living with HIV since 2000 and writing about HIV activism, science, and treatment since 1994. He writes for and has been a staffer at POZ, and also writes for the New York Times, New York magazine, Out magazine, The Advocate, Details, and many other publications. He is currently working on a big soapy novel with AIDS as a backdrop. He lives in Brooklyn with his husband, Damien, a French illustrator and animator. He’s also been inspired to eat an anti-inflammation diet after writing this issue.

50+ ANd Fabulous!

Photo: Damien Florébert Cuypers

B:10.75”

S:10”

T:10.5”

A

s a New Yorker who’s written about HIV since 1994 and been HIV-positive since 2000, I remain ever grateful to—and in awe of—the activists who came before me and literally laid their bodies down in the streets for the treatments and benefits that keep us alive and well today. I have the immense privilege of barely having to think about my HIV, whereas others once declined and died from it before they hit 30 or 40. Many others who survived watched countless loved ones die. Suffice it to say, I am filled with immense gratitude.

But I’ve read with concern in recent years research showing that those of us with HIV—even well-managed, undetectable HIV—have a lot to be vigilant about as we age. And believe me, HIV-positive folks over 50 are big news right now. If you’re among them, you should know that by 2015, you’ll make up over half of all Americans with HIV. That means you’ll be part of a group that’s roughly half-a-million strong. That’s important, because aging with HIV comes with challenges. The disease and/or its medications accelerate a lot of the problems that normally come with aging, such as memory loss, bone problems, and heart disease. Add to that the mental and emotional issues that can accompany aging with HIV: financial instability, depression, anxiety, isolation, stigma, loneliness—it can be rough going at times. Hence this special issue. Here, we’ll not only give you the latest facts, we’ll introduce you to older folks with HIV all over the country who’ve faced, or continue to face, these challenges with resilience, resourcefulness, and a good attitude. You’ll find a lot of practical knowledge here. Everything from knowing what to get screened for and how to eat healthy and delicious food on a budget, to getting exercise without joining a pricey gym and, perhaps most important, how to combat depression

and isolation by reaching out for help. Or by helping others. You’d be surprised how much those two things are interrelated. Resources for people with HIV vary widely throughout the country. Let’s keep agitating like our AIDS forebears did to make sure that everyone aging with HIV gets the best care and support they can, whether they’re in Massachusetts or Alabama. But let’s also do the things that we can do today, without any major systemic change, to prolong and improve our lives: quitting smoking, eating healthy food instead of junk, exercising, staying up to date on HIV treatment info, and being open to help, and to helping others. We owe it to all those who fought hard so that we could be here reading this today. Let’s honor them by taking care of ourselves, and one another, in 2014.

Let’s keep agitating like our AIDS forebears did to make sure that everyone aging with HIV gets the best care and support they can.

Special thanks to Antonio Urbina, MD, associate medical director, Spencer Cox Center, New York City, and L. Jeanine Bockhardt-Murray, MD, AAHIVS, chief medical officer, Harlem United/URAM, for lending their expertise and review to this issue.

—T im M u r p h y

POSITIVELY AWARE wi nter 2 013/2 014 5


MORE THAN There might be only about 50,000 Americans alive who’ve lived with HIV longer than 25 years. But boy, do they have wisdom to share with us.

“Once better HIV treatment became available in the late ’90s, we had to adjust to the idea that we weren’t going to die tomorrow.” —Perry Halkitis, 50 Researcher, New York City Diagnosed with HIV in 1988

6

wi nter 2 013/2 014 POSITIVELY AWARE

If anyone ever had to make a conscious decision to go on living, it’s performer-turned-activist Reginald Brown, 61, of Brooklyn. He was diagnosed with HIV in 1986, years before lifesaving drugs. “I went from total terror and fear and not understanding and ignorance to deciding, ‘Okay, what am I going to do about this?’” he recalls. “It focused me, made me prioritize what’s important.” Nearly 20 years later, he’s never had an HIV- or AIDSrelated illness. “A year ago,” he says, “I had a spiritual awakening and said, ‘Okay, the Lord is telling me something: You’re still here and you need to get out there so people can see you.” Now he not only works with the groups VOCAL-NY and ACT UP-NY to agitate for rent fairness for low-income people with HIV/ AIDS, he’s also active with Unity Fellowship of Christ, a church for LGBT people of color. He’s not alone. According to New York University researcher Perry Halkitis, author of the recent book The AIDS Generation and an HIV longtime survivor himself, folks who lived through the worst years of the AIDS epidemic have a lot to teach us. “In addition to fighting for our lives, sometimes in the streets, to get the government to pay attention to us and people not to hate us, we also learned incredible skills of resilience,” says Halkitis. “Once better HIV treatment became available in the late ’90s, we had to adjust to the idea that we weren’t going to die tomorrow. We had to learn to take care of ourselves over the long-term, and how to have happy, meaningful lives.” Finally, it seems, HIV’s longtime survivors are getting their due. In recent years, the documentaries We Were Here, Vito, How to Survive a Plague, and United in Anger have chronicled how such folks fought for effective HIV meds and policies while taking care of one another back in the ’80s and ’90s. Now they’re telling their stories. In addition to Halkitis’ book, Sean Strub, HIV-positive himself since the early ’80s, has published Body Counts, his memoir of being part of the activist group ACT UP and the first openly HIV-positive candidate to run for Congress. Today, he fights for the repeal of laws that unfairly criminalize HIV-positive people for not disclosing their HIV status to sex partners, even when their virus is undetectable and they use condoms. But longtime survivors, most of whom are over 50,


THE 50+ ISSUE

‘SURVIVING’—THRIVING often face multiple challenges as they age. Many of those challenges—as well as how we can address them—are covered in this special issue. But one of the biggest is loneliness and isolation, perhaps from having survived many loved ones and friends, which can sometimes lead to depression and/or substance abuse. “We did a study of people with HIV over 50 and saw very high levels of this,” says Mark Brennan-Ing, PhD, a researcher at the AIDS Community Research Initative of America (ACRIA), which has a special focus on the needs of older people with HIV. If that describes you, how do you break the cycle? First of all, talk to someone about it—your doctor, someone at your local HIV/AIDS agency, a therapist, your life partner, or a trusted friend or family member. Maybe you need professional treatment. Maybe you want to go to a support group or a 12-step group, especially if you are

dealing with an addiction. There are resources available at AIDS service organizations (ASOs) throughout the country—you can find a national list at asofinder.com. Then it’s time to reach out. “We longtime survivors need each other,” says Halkitis. “There’s still a lot of work to be done.” So whether you’re tapping into a national network like the Campaign to End AIDS (c2ea.org) or the longtime survivor group LetsKickASS.org, or you’re just the one who organizes a weekly movie night for your friends, you can step out of yourself and tap into something bigger. You’ll feel better for doing it! Just ask Reginald Brown. “My faith keeps me going,” he says. “There’s a reason I’m still here! It’s to stand up for people who can’t do it themselves. I have righteous indignation. When I see something that’s not right, I have to do something about it.”

TIPS FROM THE PROS Perry Halkitis, 50 Don’t let HIV define you. You need to move forward with your life and not define yourself solely by your HIV status. I am as much an HIV-positive man as I am a GreekAmerican, a scholar, a husband, and a top. And now, at age 50, I am a member of AARP. All of these elements are critical to my existence. Be smarter than the virus. Yes, this virus is clever, but we are smarter. Stay up to speed with all advances in the management of our condition. Throughout the last 30 years, I have learned as much as I can about HIV and gained knowledge about how best to stay healthy. That provides me a sense of control as I grow older. Partner with your doctor. I’ve worked very closely with my doctor. I ask questions, I probe, I

doubt, and I decide. My doctor is my partner in this battle. Together we try to make sense of what my body is telling me and how we need to take care of it. Hit the gym! Do I like going to the gym five days a week? Not really, but I do it. Part of growing older means I must maintain my level of activity to enhance my vitality and stamina. Exercise helps to slow down the ravages of aging, it keeps me limber and fit, and manages the potential effects of HIV and its treatments, such as lipodystrophy. It also means that I still look great in a bathing suit on Fire Island in the summer. Focus on your total health. I pay attention to physical, social, and emotional health. I seek support from my friends, surround myself with people I love, recognize that the stress of work must be kept

in check, and seek professional help when emotions are too big to handle. We fight HIV with triple combination therapies, and so we must also engage our own trinity of body, heart, and mind.

Reginald Brown, 61 Activist, New York City Diagnosed with HIV in 1986

When I get tired, I know to stop and take a nap! I eat a lot of fresh vegetables, usually choose chicken and fish over red meat, and avoid processed food and bleached flour. I stopped smoking years ago and also went to rehab in 2010 for crack addiction. You have to find a passion, whatever it is. Otherwise, life’s a chore!

POSITIVELY AWARE wi nter 2 013/2 014 7


FIGHTING THE FIR Both HIV and aging can cause chronic inflammation, when the body goes into overdrive to protect itself. That’s not good—and here’s how to fight it. You’ve heard of inflammation, right? It’s when you bang your toe and the area around it gets all red and painful. Or when you’ve got the flu and the body, fighting off the infection, makes you feel all achey and awful. Inflammation may look and feel bad, but it signals that cells and proteins in your body are doing their job to fight off invaders. And that’s a good thing. Unless, that is, inflammation happens all the time. And research in the past 10 years has shown that people with HIV, even those who are on HIV meds with undetectable viral load, have high levels of chronic inflammation throughout their body. To put it simply, the immune system is working too hard, on overdrive, and that can wear down vital body systems over time, such as the heart and other organs, bone strength, and brain

function, much faster than in HIV-negative folks. It can also promote certain cancers. Add the fact that inflammation kicks in harder among older folks anyway, and those over 50 with HIV really have an inflammation issue on their hands. Unfortunately, pharma treatments fighting inflammation are still in the experimental phase. Until they’re available, though, there are some things you can do—in consultation with your doctor—to reduce inflammation.

Take your HIV meds faithfully. The more active HIV you have in your system, the harder your immune system has to fight—hence, the more inflammation. Taking your HIV meds correctly and consistently will almost always reduce HIV in your blood to an undetectable level, and that’s good for fighting inflammation. But HIV can still be active in other body places, such as in your gut or your brain-spine area. That’s why you should aim for the following inflammation-fighting steps.

Stop smoking! Last year, a Danish study found that

TIPS FROM THE PROS Nelson Vergel, 55 The longtime activist, author of Testosterone: A Man’s Guide and creator of nelsonvergel.com, shares his top advice for living long and strong with HIV.

Check your T levels. Make sure your doctor is monitoring your testosterone levels. Women, you too! Up to half of us HIV-positive folks over 50 have low testosterone, which can cause fatigue, depression, no sex drive, and reduced alertness.

Watch the sugar. Minimize processed sugars like in candy and pastries and go for fruit. That’ll help you avoid or fight insulin resistance, which leads to diabetes. Avoid “white” foods like white rice,

8

wi nter 2 013/2 014 POSITIVELY AWARE

bread, and pasta. But yogurt’s great! Go for deeply colored fruits and veggies. Avoid sodas, even diet ones. They’re horrible for you. Drink water instead or green tea— it’s full of antioxidant power.

smear, maybe even an anoscopy, because we have higher rates of HPV-related anal cancer. Many HIV doctors still don’t know about this. Push your doctor to help you find someone who does this.

Don’t skip breakfast. I do eggs

Care for your mind and soul.

with black beans and wild rice, or yogurt with nuts and berries. Breakfast sets you up metabolically for the rest of the day.

Don’t get socially isolated. Reach out to local support groups. Find something you’re passionate about. If you don’t have a purpose, you may get depressed. Your full-time goal can’t be only to stay healthy. Try volunteering—it’ll get you out of your own head. Don’t wait for friends to reach out to you—do it first.

Get your vitamin D. It’s important for bone density, and most of us don’t get enough. Ask your doctor to recommend a quality supplement—I use Jarrow. And get at least 20 minutes of sun a day.

Have sex! It’s like a muscle: you Pap smears aren’t just for women. All HIV-positive people need to get a yearly anal Pap

have to use it or you’re going to lose it.


THE 50+ ISSUE

E HIV-positive people on effective HIV treatment lost more years of their life to smoking—at least a dozen, to be exact—than to HIV. Simply put, smoking plus HIV plus aging is an inflammation nightmare. Seek all the help you can—doctors, friends, support groups, “the patch,” oral medications, acupuncture, hypnosis, whatever—to quit or reduce your smoking. Today, there are even “apps” for your phone to coach you toward quitting. And remember, never stop trying to quit!

Eat an anti-inflammation diet. Some foods increase inflammation while some foods fight against it. Nobody’s perfect, and everyone loves a cheeseburger from time to time, but as much as you can, you should avoid red meat; overly fatty, salty, and sugary foods; and refined carbs such as white rice, white breads, pastries, pretzels, pastas, etc. Eat as many as you can of fresh fruits and vegetables; lean proteins like chicken, salmon, and turkey; yogurt (great for stomach health!); whole grains (like those in wheat or multi-grain bread), brown rice, and beans; nuts of all sorts; natural foods of deep colors, such as sweet potatoes (instead of white), spinach, kale, beets, blueberries, and cranberries—they’re loaded with inflammation-fighters. So is dark chocolate, so eat a bit of that for dessert or a snack and skip the brownie. Instead of your morning bagel or muffin, try a bowl of fruit, yogurt, nuts, and ground flaxseed (an anti-inflammation superhero!), sweetened with a drizzle of honey.

Get off your butt. If you’re already a running, swimming, or yoga nut, great. If your idea of exercise is the walk from the couch to the fridge to get more Ben & Jerry’s, you should start moving vigorously at least 30 minutes a day. Try walking to or from work, lunch, or errands instead of driving or busing it. But before you attempt to become a triathlete, talk to your doctor and come up with a reasonable plan for you. Then go ahead and take the stairs instead of elevators or sign up with your friends for any fun, low-cost gym or exercise class you can find.

“Your immune system is on overdrive, and that can wear down vital body systems over time.” —Nelson Vergel, 55 HIV treatment activist, Houston Diagnosed with HIV in 1986

Talk to your doctor about anti-inflammatory supplements. Daily doses of baby aspirin, a quality multivitamin, turmeric, fish oils, and coenzyme Q10 have all proven to have strong anti-inflammatory power. So have cholesterol-lowering statin drugs. But talk to your doctor before starting any of these.

POSITIVELY AWARE wi nter 2 013/2 014 9


“I don’t buy snacks when I shop, because once those snacks get in the house, I’m in trouble!” —Nancy Santiago, 55 Needle exchange staffer, Philadelphia Diagnosed with HIV in 2002

CARING FOR THE INSIDE Aging brings wear and tear on your heart, liver, and kidneys. HIV adds to it. But medications, diet, and lifestyle can all help fight those trends. “I’m a mother of five, grandmother of 10, woman, best friend,” says spunky Nancy Santiago, 55, of Philadelphia, who works part-time at a needle exchange that helps keep drug users free of HIV and hepatitis C. “HIV doesn’t define me!” Luckily, Santiago’s never had many problems with her HIV since she was diagnosed in 2002, after having sex 10

wi nter 2 013/2 014 POSITIVELY AWARE

with a boyfriend who didn’t tell her he was HIV-positive. What she does she really struggle with? Her diabetes. “I have to do my insulin five times a day, and I have to be careful with what I eat and how much I eat, because almost everything contains some amount of sugar. I don’t buy snacks when I shop, because once those snacks get in the house, I’m in trouble!” she says with a giggle, “Instead, I fantasize that I’m eating it. And I have an orange at night instead.” In some ways, Santiago’s scenario is typical, because research shows that even when HIV is well managed, folks with HIV over 50 still have a higher incidence of


THE 50+ ISSUE

TIPS FROM THE PROS Nancy Santiago, 55 As for our Philly abuela, what is Santiago doing to stay healthy? “I don’t like to say I’m HIVpositive first. That’s not who I am.” “I don’t buy snacks when I

shop, because once those snacks get in the house, I’m in trouble!” she says with a giggle, “Instead, I fantasize that I’m eating it. And I have an orange at night instead.” “I’m on my feet at my job every day, which keeps me active.”

organ-related complications, such as heart disease, liver disease, diabetes, and high blood pressure (which can damage the kidneys), than their HIV-negative peers. Organ decline appears to happen faster in folks with HIV than other middle-agers and seniors. Often, it’s because of a mix of the years-long toll of HIV meds, HIV causing amped-up inflammation in the body, the presence of coinfections like hepatitis B or C, and a history of smoking, alcohol, and/or drug use. Thankfully, as with all complications of HIV and aging, there are concrete action steps you and your doctor can take to buck this trend. Let’s have a look:

Get screened regularly. If you’re seeing your HIV doctor every three months or so, make sure they’re doing basic screening of your organ functions. This includes testing your cholesterol levels (lipids) as a measure of heart health, blood-sugar levels, liver function tests (ALT, AST, alkaline phosphatase, PT, INR, albumin, and

Oh, and she has one more tip for aging healthy with HIV. “Stay stress-free! I try to let most stressful things fly over my head. And I’m only 4’9”, so they don’t have to go very high!”

bilirubin) and kidney (renal) function tests (BUN, creatinine, and creatinine clearance). Ask your doctor to go over these results, and what they mean, with you.

Review all your meds. Certain meds are more likely to cause problems with your heart, liver, or kidneys than others. Read up in the POSITIVELY AWARE HIV Drug Guide at positively aware.com/drugguide, or other online resources, and talk to your doctor about the pros and cons of different meds.

Talk to your doctor about organ-protective meds. Drugs called statins (such as Lipitor) can not only bring down your cholesterol level and boost your heart health, they also have a beneficial anti-inflammatory effect. High-blood pressure medication, a daily baby aspirin, turmeric, fish oils—they can all play a role in keeping your organs healthy. Talk to your doc about them, as well as over-the-counter supplements before starting them.

EATING HEALTHY & CHEAP

Think you can’t eat an antiinflammation diet on a budget? We checked in with Lisa Zullig, who heads up nutrition at God’s Love We Deliver, which delivers home-cooked meals to people with AIDS and other illnesses in New York City. Here are her tips on how to spend and use your dollars wisely at the supermarket.

puréed dips to soups, chilis, and casseroles.

Count those beans. Dried beans bought in bulk are cheaper than the canned variety—and they’re loaded with nutrients. Soak ’em and boil ’em and you can make all sorts of things with them from

Make chicken soup. Put a chicken

Buy frozen fish and vegetables. They’re flash-frozen so they retain nutrients better than fresh vegetables that sit around for days. Plus you can thaw just as much as you need, thus not wasting anything. And they’re economical.

(whole or parts), carrots, celery, and onion in a big pot with water and salt and pepper. Boil it until the chicken is done and then remove the bones. Then throw in

pasta, rice, or a grain like barley if you wish. Voilà! You’ve got a superhealthy, delicious meal that’ll last for days. Or you can freeze portions for per-meal eating.

Pan-fry salmon burgers. Salmon is so good for you. Buy it canned and crush up the bones—they’re loaded with nutrients. Then mix with diced onions and a red pepper, breadcrumbs, seasoning and an egg. Form into patties, pan-fry them, and serve them topped with salsa, with salad or a vegetable on the side. (You can do the exact same thing with turkey burger.)

POSITIVELY AWARE wi nter 2 013/2 014 11


NO BRITTLE BONE Both HIV and aging put you at risk for accelerated bone weakness. Here’s how to keep your bones healthy well into your golden years. “We’re the first generation to age with HIV, so it’s a complete adventure!” says Stephanie Brooks-Wiggins, 68, a retired hospital administrator in Baltimore diagnosed with HIV in 1986. She’s chosen to turn her personal adventure into activism, speaking publicly, and serving as a member of Older Women Embracing Life (OWEL), a support and advocacy group for women her age with HIV. When she’s not busy with that, she’s back in school learning to be a tax preparer for H&R Block, visiting her kids and grandkids in various states, or making magic in the kitchen for her husband, Vernon, a retired cop. “I’m a gourmet cook,” she says proudly. “I make a roast lamb with a rosemary thyme crust that people die for. And I make ribs that disappear!” But despite a full life, Brooks-Wiggins has had her HIV-related challenges along the way, including osteonecrosis, or bone death. She’s had to have her left hip and both shoulders replaced. “I’m in much better shape since then,” she says. “I walk with a little limp, but I have 100% mobility in my arms.” Her case may be especially severe, but osteoporosis, or bone weakening, is indeed something that people with HIV experience more, and sooner, than their aging HIV-negative peers. (Its milder precursor is called osteopenia.) That’s believed to be from a mix of the toll that HIV itself takes on bones (once again, inflammation) and of HIV meds, some of which have been found to sometimes harm bones. What’s more, bone weakening has no overt symptoms until the point of fracture. So it’s all the more important to prevent and screen for bone loss as we advance beyond age 50. Here’s how:

scan you to check your bone mineral density (BMD), a marker of bone health. All men with HIV over 50 and post-menopausal women with HIV should have this test every few years. If your health plan doesn’t cover it, keep in mind that it costs about $150. Not cheap, but important enough that you might want to pay for it yourself. The test will score you against the bones of a healthy 30-year-old of your sex. If your “T-score” is below -1.0, you have osteopenia; below -2.5, osteoporosis.

Talk to your doctor about bone-builders. There are several prescription medications that have been found safe for HIV-positive people to take to build stronger bones. In addition, make sure you’re getting enough vitamin D and calcium, essential bone nutrients, via your diet (think low-fat milk and cheese, yogurt, broccoli, kale, canned salmon or tuna, and fish oils); supplements (top guidelines for HIV-positive folks recommend 1,000–1,500 mg of calcium and 800–1,000 IU of vitamin D daily); and sunlight.

Talk to your doctor about all your meds. Are any of them linked to bone problems? Some HIV drugs have been known to decrease bone mineral density, so if you already know you have osteopenia or osteoporosis, your doctor might want to monitor your BMD if you’re taking certain medications. Do resistance exercise. Anything demanding that puts some rhythmic impact on your bones is great to build bone density. That includes everything from walking, running, hiking, tennis and basketball to yoga, dancing, weightlifting, weight machines and basic push-ups and squats. Swimming and cycling are great for overall health but not so great for bones, as they don’t put impact on them.

Get scanned. A DEXA scan, that is. A camera will

TIPS FROM THE PROS Stephanie Brooks-Wiggins, 68 Since her shoulder and hip replacements, Brooks-Wiggins has done a lot to improve her bone health. Most importantly, she quit smoking. “I got pneumonia, and I said, ‘Okay, this is it.’ I wore the

12

wi nter 2 013/2 014 POSITIVELY AWARE

nicotine patch for a week, plus I see a therapist every other week.” She’s also put a new emphasis on diet and exercise; “I eat lots of fresh fruits and vegetables. I walk my dog, Nairobi, for exercise. And I go to my orthopedic surgeon at least once a year for an MRI to see

how my bones are looking.” But despite the time and effort she’s had to put into her health, Brooks-Wiggins remembers to pull back and look at the big picture. “Don’t let HIV define you!” she insists. “You’re only as old as you let yourself feel.”


THE 50+ ISSUE

S

“I’m in much better shape since the [hip and shoulder] replacements. I walk with a little limp, but I have 100% mobility in my arms.” —Stephanie Brooks-Wiggins, 68 Activist and author, Baltimore Diagnosed with HIV in 1986

POSITIVELY AWARE wi nter 2 013/2 014 13


CONQUERIN Older folks with HIV are at higher risk for various cancers. But there is a lot you can do to prevent that, or to cope if you’re diagnosed.

“Self-pity is not an option for me. When it comes to AIDS, I accept it and then I do whatever’s in my power to control and defeat it.” —Shirlene Cooper, 51 HIV/AIDS housing activist, Brooklyn, NY Diagnosed with HIV in 1997

14

wi nter 2 013/2 014 POSITIVELY AWARE

Shirlene Cooper, 51, is a never-give-up longtime AIDS survivor. Diagnosed near death in 1997 with HIV, syphilis, cervical cancer, and TB, this Brooklyner spent eight months in the hospital before stabilizing. Once she got out, she kicked drugs and went on to become a major New York activist for decent housing for folks with HIV/AIDS. “Self-pity is not an option for me,” she says. “When it comes to AIDS, I accept it and then I do whatever’s in my power to control and defeat it.” That includes defeating cancer. Since 1997, Cooper’s had cancer of the cervix, vulva, rectum, skin, and mouth. She’s been treated for these cancers multiple times. “I say to my doctors, ‘How many times are you going to tell me I’m cancer-free?’” she laughs. But right now, she’s cancer-free once again, and that’s a good thing. Cooper’s cancer history is unusually tough, but she reflects a truth: aging HIVpositive men and women, even those on effective HIV treatment, are at a significantly higher risk for various cancers than their HIV-negative peers, and while we’ve seen a decline in the HIV-cocktail era of “old-fashioned” AIDS cancers like Kaposi’s sarcoma in people with HIV, we’ve also seen an increase in cancers of the lungs, liver, kidneys, anus, head and neck, and skin cancers, in addition to Hodgkin’s lymphoma. Many of these cancers are rooted in the human papilloma virus (HPV), which is passed through sexual contact—like pregnancy and other STIs including HIV, it only takes one time to get it. It also causes genital warts and is more common, causing more problems, in HIV-positive folks than in the general population. There’s a preventive vaccine for it now, but it’s often not covered by insurers for people over 26 because, by that age, most people have already been exposed to HPV. “I’ve particularly seen higher rates of cancer in patients of mine whose T-cells were under 200 for a sustained period of time,” says Dr. Jeannine Bookhardt-Murray, chief medical officer at New York’s Harlem United, which cares for hundreds of HIV-positive patients. “I think it all goes back to the toll that HIV and aging together take on the body.” As with other health issues, there’s much you can do to prevent cancer or to fight it aggressively if you have it, but this is an area where your local quality of health care matters a lot, and where you might have to do some


THE 50+ ISSUE

UERING CANCER TIPS FROM THE PROS Shirlene Cooper, 51 You have to catch it in time. Make sure you go to your doctor appointments regularly. I get screened for everything every three months. Work to find the best hospitals you can, even if you have to travel. It’s worth it.

Treat the pain responsibly. I needed morphine after some cancer treatments. But I was honest

with my providers that I was a recovering addict. They helped me manage my pain. I learned to get up and move around with pain. Before long I wasn’t even feeling it!

Walk. I walk to my doctor and other appointments as much as possible instead of taking trains, buses, or vans. I make myself take the stairs when I could take an elevator. When I come out of doctor

extra investigating, pushing, and even traveling to get the treatment you need. Take these steps:

Get checked regularly. Talk to your primary HIV doctor about getting screened at least once a year for various cancers. A dermatologist should check you for skin cancers. Make dental visits regularly, and ask your dentist if s/he’s checking for oral cancer. If you’re 40 to 50, talk to your doctor about colorectal screening, and, if you’re a man, about prostate screening. Whether you’re a woman or a man (straight or gay), talk to your doctor about cervical and/or anal Pap smears, or even coloscopic or anoscopic (imagery from a probe) screening for HPV-related pre-cancerous lesions, which are dramatically more common in HIV-positive people. HPV-related cancers, such as cervical and anal, can be prevented with regular screening and treatment (via cryotherapy, laser therapy, and surgery), which is why it’s so important. Unfortunately, some HIV doctors are behind the curve regarding this serious area of cancer in HIV-positive folks, which is why you might have to take the initiative, make some calls, and even travel to a different city to find a provider trained in screening and treating this. University of California-San Francisco keeps a national database of providers here: http:// id.medicine.ucsf.edu/analcancerinfo/providers.html . You can also call them at (415) 353-7100. Additionally, a study is being planned in 15 cities to see if regular screening and treatment of pre-cancerous lesions can help prevent anal cancer. You and your doctor can watch for enrollment at anchorstudy.org. You might want to talk to your doctor about getting the HPV vaccine, if your insurance will cover it. There’s some evidence that it may protect against HPV-related

visits uptown, I take a long walk in Central Park. That clears my mind.

Keep living your life. I haven’t let cancer stop me. The last 15 years, I’ve been to 46 states and 23 countries working on HIV/AIDS issues. I’m planning on going to the International AIDS Conference in Melbourne, Australia, in 2014. I love spending time with my daughter and grandkids. And I love to cook. You should taste my lasagna!

pre-cancers and cancers in HIV-positive people. Some cancers are more likely if you have special risk factors, such as lung cancer if you smoke or recently quit, or liver cancer if you are co-infected with hepatitis B or C, and/or have cirrhosis of the liver.

Quit smoking. Please! People with HIV who smoke not only have higher rates of lung cancer but of many cancers, including anal cancer.

If you’re diagnosed with cancer, get connected. The single best thing you can do if diagnosed with a cancer is to get connected, via local groups or online forums, chats, and sites, with other folks, regardless of HIV status, who are going through it or who’ve been there. Start at thebody.com and click on “Ask the Experts,” forums.poz.com, or join the Yahoo group PozHealth. For anal cancer specifically, you can find resources at analcancerfoundation.org/resources/patient-support/.

For the latest clinical trials for cancers in HIV-positive people, check out the AIDS Malignancy Consortium at http://pub.emmes.com/study/amc/public/index.htm. It’s written for medical pros so you might want your doctor to look at it with you. As for Shirlene Cooper, she’s made a lot of lifestyle changes. “Now I eat more fish, brown rice, and salads, and stay away from greasy foods,” she says. “I quit smoking the day I found out I had oral cancer,” she says proudly. Finally, she just takes it in stride. “When I found out I had HIV in 1997 and went through near-death, I asked God to give me a second chance,” she says. “He did, and I really cherish that.” POSITIVELY AWARE wi nter 2 013/2 014 15


KEEPING YOUR BRAIN People with HIV are at higher risk for the brain slowdown everyone experiences as they age. But there are plenty of ways to fight it and keep your mind nimble! Few have done as much to highlight the risk of HIV in the over-50 population than Jane Fowler, 78. Ever since the journalist and grandma found out in 1991 that she was HIV-positive from unprotected sex with a man she’d been dating after her divorce, she’s been a tireless speaker and advocate for the importance of HIV awareness and testing in older folks. “When I decided to be public about my HIV, my life changed,” she says. “I’m passionate about not seeing more infections in older people whose doctors think they don’t have to talk to them about safe sex.” Fowler’s still on the speaking circuit. But she feels her work has gotten harder in recent years because she’s not as sharp as she used to be. (She sure sounded sharp over the phone!) “I feel like my powers of hearing, speaking, and thinking things through are weakening,” she says. “I can feel myself aging.” Even if you’re in your 50s or 60s, you may identify with Fowler, and with good reason: In recent years, researchers have discovered that HIV seems to play a role in “aging” the brain faster than it ages in HIVnegative folks. That could be because some HIV med combinations can’t penetrate the barrier that encases our brain, so HIV is replicating in that area, or it could be because HIV heightens inflammation, which takes its toll throughout the body, including the brain. Either way,

it can mean that you may experience certain aspects of brain slowdown—such as spotty memory, grasping for words, or taking longer to complete tasks—faster than your HIV-free peers. But hold on! There’s lots you can do keep your brain as healthy and sharp as possible. Here are a few:

Get help to kick heavy drinking and/or drugs. Studies have shown that the mix of HIV, aging, and heavy drinking or drug use (especially cocaine and crystal meth) are lethal to the brain, and can lead to long-term damages. If you are drinking heavily or doing drugs, reach out for help. Your mind will thank you later. As it will for quitting smoking, too! Carcinogens aren’t exactly brain sharpeners. Rule out other causes. Talk to your doctor if you’re having a hard time with brain function. Perhaps it’s due to a lack of certain nutrients or depression.

Keep your brain connected and active. A job that brings you pleasure, volunteering, activism, socializing with friends and family, travel, writing, reading, playing board or card games—they’re all things that keep the mind alive. So does prayer and meditation—research shows it! So ask yourself where you’re lacking among these things and then reach out to put more of them in your life! “I take my fish oil and calcium,” Jane says. “Plus, I read constantly. I’m on the board of my local library. And I love magazines—Time, People, EW, Vanity Fair. I love keeping up with what’s going on in the world.”

TIPS FROM THE PROS Jane Fowler, 78 Get real. Accept your diagnosis, then work on living with it and deciding what needs to be done.

HIV! I never dwell on it. I never think about it except maybe every morning when I take my HIV meds, or when I go in for bloodwork.

Get happy. I might have a beer Get help. Find a doctor and a social service provider or case manager that you like. They can be so helpful.

every night. I like ale. I’m true to Kansas City Boulevard Beer, a local brew.

Get healthy. Every morning I have Get over it! Then forget you have

16

wi nter 2 013/2 014 POSITIVELY AWARE

fresh fruit and yogurt and cover it

with nuts and dried fruits. That’s my one concession to healthy eating. I love Mexican food, I love Chinese food! I despise turkey. I have really pulled away from red meat, and that’s not easy in Kansas City, because we’re a meat town!

Get connected. You need to get out of yourself. Find things to do that you enjoy. You need a mission in life.


THE 50+ ISSUE

IN SHARP

“When I decided to be public about my HIV, my life changed. I’m passionate about not seeing more infections in older people whose doctors think they don’t have to talk to them about safe sex.” —Jane Fowler, 78 Journalist, Kansas City Diagnosed with HIV in 1991

POSITIVELY AWARE wi nter 2 013/2 014 17


BRIGHTENIN Aging with HIV can come with its fair share of depression and anxiety. But there’s help out there. You just have to reach for it.

“My belief in the mission of what we do keeps me going.” —Tom Menard, 55 Vice president of operations, AIDS Foundation of Chicago Chicago Diagnosed with HIV in 1991

It’s safe to say that Tom Menard, 55, the vice president of operations at the AIDS Foundation of Chicago, has been “through it.” He estimates he got HIV as far back as 1982 but wasn’t diagnosed until 1991. “The diagnosis definitely took a toll on the relationship I was in at the time,” he says. Then came weight loss, down to 137 pounds, with his T-cells down to 97, then the first HIV drug, AZT, which gave him anemia, then the protease inhibitors, which caused him upset stomach. Nearly 20 years later, he’s fairly healthy and lives in the suburbs with his partner of four years. But he admits that, through the years, he’s felt “down” a lot of the time. “I’d feel tired, very sad, not wanting to do much but go to work and come home,” he says. “I felt like the world was closing in. The feeling really sneaks up on you.” The depression Menard has experienced is far from uncommon in older people with HIV. A survey of nearly 1,000 New Yorkers age 50 and older living with HIV for an average of 13 years, done by ACRIA, found that two-thirds called themselves moderately or severely depressed—more than five times the rate of depression in that age group in the general population. “We saw very high lifetime and current rates of substance use, particularly alcohol use,” says Mark Brennan-Ing, PhD, a study leader, “as well as very high levels of loneliness, social isolation, and stigma.” Research has also shown that depression might be caused by HIV in brain fluid, which can occur even in people with HIV that’s undetectable on blood tests. If you count yourself among the ranks of the depressed and anxious, first of all, cut yourself some slack. If you’re an HIV longtime survivor, you’ve likely lived through years of chronic stress while watching others pass. If you’re recently diagnosed, you’re suddenly dealing with the HIV factor at mid-life. Add to that possible stress over health care, job and financial stability, and possible isolation, loneliness, and not wanting to tell people about your HIV status for fear of suffering rejection, and it’s natural to not always feel zippity-doo-dah. But it’s important to know that depression and anxiety are treatable illnesses, just like high cholesterol or diabetes, and not things you have to simply accept. Start here:

Tell someone. Probably your doctor, but perhaps also your spouse, family members, best friend, therapist, or a 18

wi nter 2 013/2 014 POSITIVELY AWARE


THE 50+ ISSUE

ENING THE BLUES counselor at your local AIDS agency or place of worship. Beating depression starts with asking for help. Also, your doctor should screen you for possible causes of depression including low testosterone, which is common in older people with HIV (including women!), or thyroid problems.

Seek professional help. Someone, likely your doctor, can help you find a therapist to start working with. You’ll be surprised at how depression starts to feel more manageable once you start talking about what’s causing it, when it waxes and wanes, and what works against it. You might also talk with a psychiatrist about starting antidepressants, even for a short term.

your upper body. “My mood felt better in a week,” he says. “Today, if I miss the gel a day or two, I can feel the dip in my mood. It’s done the trick, but I’d go back on antidepressants if I had to.” Menard says he still struggles to reach out socially as much as he should. But he derives satisfaction from his job (“my belief in the mission of what we do keeps me going”), his partner (“he’s my best friend”), and his garden. “That’s my not-so-secret happy place, when the weather is good and I’m out there raking leaves or planting things.” It’s also where he gets his exercise, as well as bowling or dancing in front of his Wii. “It’s the greatest invention for in-home exercise,” he says. “You can act like an idiot in your own home and on your own time!”

Look at your drinking and drug use. Not only can depression, loneliness, and anxiety drive you to them, but they will make your depression and anxiety worse. It’s a vicious cycle, and you can’t really treat depression and anxiety without treating substance use as well. Talk to your doctor or someone about it. They may direct you to 12-step groups such as Alcoholics Anonymous or Narcotics Anonymous, and/or to a special treatment program or support group. As for Menard, he’s found that going on antidepressants a few times over the past several years has helped. Then, a few years ago, his doctor found out he had low testosterone so he went on testosterone replacement therapy, which is usually as simple as a gel you rub on

“The more you know about HIV, the more you can advocate for yourself.” —Phill Wilson, 57 President and CEO, Black AIDS Institute, Los Angeles Diagnosed with HIV in 1984

TIPS FROM THE PROS Phill Wilson, 57 The leader of the Black AIDS Institute (BAI), which trains ASOs and health departments on fighting HIV/AIDS in the black community, shares his wisdom for living long and strong with HIV:

Don’t hide. I’m out about my HIV status. Not living in the shadows and letting a secret fester inside me has really helped me build a personal support network.

[BAI] are focused on using “Obamacare” as a tool to help end the AIDS epidemic. Contributing to the fight against AIDS gives me purpose and boosts my mental health.

Get on HIV treatment if you’re not. People underestimate how well HIV treatment works today. And I’ve been on some pretty bad treatment back in the day! Things have changed a lot.

Increase your HIV literacy. The Be an activist. Right now, we

more you know about HIV, the

more you can advocate for yourself. Read our Black AIDS Weekly newsletter at blackaids.org. I also love positivelyaware.com, poz.com and thebody.com.

Live moderately. I’ve never been a drinker, smoker, or drug user. I stay away from red meat. I’m heavy on fish and chicken. My go-to dish is roast chicken with green beans, salad, and mashed potatoes. Stay connected. I’m not religious, but I have strong relationships with my family and friends.

POSITIVELY AWARE wi nter 2 013/2 014 19


NURTURIN Aging with HIV isn’t just about caring for your body and your mind. There’s also your soul—that intangible quality that makes life worth living, even when the going gets rough. Check out this treatment plan for happiness!

Charlene Arcila, 51 PREVENTION SPECIALIST, Philadelphia AIDS CONSORTIUM, PHILADELPHIA Diagnosed with AIDs in 1983

20

wi nter 2 013/2 014 POSITIVELY AWARE

“I was raised to believe I was an abomination in the eyes of God.” So says Charlene Arcila, 51, who identifies as transgender and who is an executive assistant, prevention specialist, and site supervisor for the Philadelphia AIDS Consortium. Diagnosed with AIDS in 1983, Arcila has been through the worst—multiple bouts with PCP pneumonia and thrush initially, and now arthritis and neuropathy, plus financial instability. “We’ve all had to take multiple salary cuts the past year,” she says. (Federal budget cuts have hit AIDS agencies hard nationwide.) “If I didn’t have faith in a higher being, I could understand how people could consider suicide.” Thankfully, Arcila does have faith, but it’s not in the traditional, judgmental God she learned about growing up Baptist and Catholic. A few years ago, she was asked by the LGBT-friendly Unity Church of Christ to come preach—Arcila is well-known in Philly’s LGBT community for founding and speaking at the city’s annual Trans-Health Conference—so she did. “I preached about the eunuchs in the Bible, saying that transgender people today have the spirit of the eunuchs in them,” she says. Arcila couldn’t believe a church could be so accepting. “At first I thought, is this for real?” she admits. But she came back and preached a second time. Six years later, she attends services every Sunday and is about to become an ordained minister. “It gives me spiritual rejuvenation and growth,” she says. “I see the Bible as a guide, not as the one right way. I don’t take it literally.” Arcila’s journey points to the tremendous importance of having a source of meaning in our lives. It doesn’t have to come from a traditional house of worship. The important thing is to feel connected to people or communities


THE 50+ ISSUE

URING YOUR SPIRIT TIPS FROM THE PROS Charlene Arcila, 51 Don’t be a victim. Learn how to volunteer. It’s played a big part in my recovery. I served on my local Ryan White Planning Group.

Educate yourself. In my town, I participated in Project TEACH at the HIV/AIDS group Philadelphia FIGHT (fight.org). It taught me all about the science of HIV.

Be transformative. If you’re transgender living with HIV, learn to embrace and accept the inner you. Transitioning isn’t for anyone but yourself.

beyond yourself. That plays a major role in reducing isolation and helping us get out of our own heads, gives us a framework for coping, and provides support when things get tough. Start this way:

and bored, join something fun, like a local reading group, a community project, or a recreation team. Don’t wait for others to put a plan together—be the one who offers to organize things. It’ll make you feel great.

Make a gratitude list. Even if your list includes not

Consider meditation or prayer. Recent research has

much more than being in stable health, having a roof over your head, and having enough food to eat, you’re well ahead of many people in the world! Build your list from there: Loved ones who are there for you? Sources of fun and passion? Events that bring you pleasure? Looking at an actual list can make you realize how much you have to be thankful for.

shown that daily meditation can actually improve blood pressure and change parts of the brain that regulate stress, memory, and empathy for others. Don’t know how? Just Google “how to meditate” or search to find a meditation center near you.

Take a happiness inventory. Write down points in the day when you’re happy. Meditating as you watch the sunrise? That daily chat with a relative or best friend? Walking your dog? Making your regular 12-step or other support group meeting? If you can’t identify more than one point in the day when you’re happy, it’s probably time to add some new elements to your life. Let the adventure begin! Reach out. You might start with a call to a relative or friend you haven’t chatted with for a while. Laugh about something, catch up, and then make a plan for lunch, or dinner and a movie. Start weaving such mini-reunions into your life and you’ll see how much it refreshes your spirit.

Join something. If you’re struggling with depression, anxiety, life crises, or substance issues, talk to your doctor or someone at an AIDS agency about joining a therapy, support, or 12-step group. Coping with life’s challenges is easier in a group. If you’re simply lonely

Don’t forget activism. Everything we have today that keeps people with HIV/AIDS alive is at least partly the result of activism: The Ryan White CARE Act and ADAP, modern HIV meds, anti-discrimination laws. When you get involved with AIDS activism, you’re helping yourself, but you’re also helping others and tapping into the power of community. Start by finding an HIV/AIDS agency that has an advocacy or policy department you can work with. Visit sites including positivelyaware.com, housingworks.org/activism, blackaids.org and c2ea.org to stay informed and see how you can get involved. Or join an advocacy organization. ACT UP! Follow Charlene Arcila’s example. Not only is she connected to others via her job, her trans-health organizing, and her church, but she’s also been going to 12-step meetings for over 14 years since she kicked drugs. “It all helps give me spiritual and mental balance,” she says. That’s not to say she doesn’t know how to chill out. “My fiancé and I have a date night every Wednesday,” she says. “And I often start the day with meditation, a bubble bath, and baby oil. I know how to pamper myself!” POSITIVELY AWARE wi nter 2 013/2 014 21


“You have as much right to love and to be loved as anyone else.” —Sean Strub, 55 Activist and author, New York City Diagnosed with HIV in 1985

TIPS FROM THE PROS Sean Strub, 55 Strub is the director of The Sero Project, which fights HIV criminalization laws across the country. He is also the founder of POZ magazine and the author of the newly released Body Counts: A Memoir of Politics, Sex, AIDS and Survival. Here he shares his top five tips for surviving and thriving with HIV.

22

those with expertise, but trust your instincts, too.

Connect with other people with HIV; they can provide you support, help inform and empower, and understand what you are going through in a way no one else can.

Be constructively skeptical;

Love will always be more powerful than any virus or treatment; you have as much right

“conventional wisdoms” about HIV have changed over time. Educate yourself so you can make treatment decisions with confidence. Respect

to love and be loved as anyone else. Sometimes an HIV diagnosis is a transformative wake-up call that leads to a peace and joy that

wi nter 2 013/2 014 POSITIVELY AWARE

might seem unimaginable.

Find purpose in your life that includes service to others, whether expressed through volunteer activities, your faith community, political activism, or helping an infirm neighbor. It is good for the soul and good for your health.

Forgive yourself and watch out for self-stigmatization; how we stigmatize ourselves is often far more damaging than how others stigmatize us.


THE 50+ ISSUE

Everyone says... Familiar advice for almost anyone

Much of the popular thought on how to handle HIV and aging can also apply to the general HIV-negative population. HIV-positive people are not, in this case, exceptions to the rule, but rather share a commonality with everyone who’s lived for half a century! Below are some topics frequently included in advice on how to live a long, healthy life. Eat this Lisa Zullig of God’s Love We Deliver, Nelson Vergel, and others offer these suggestions:

Minimize meat. A major study last year found that the more red and processed (e.g. bacon) meat people ate, the higher the risk they had of dying from cancer or cardiovascular disease. There’s ample evidence that a vegetarian or vegan (no dairy products like cheese, milk, or eggs) diet is the key to a longer, healthier life. If you can’t go 100% veg or vegan, at least try to reverse your meal portions so that fruits, vegetables, beans, and whole grains make up most of the plate and meat and processed “white” carbs like white breads, white rice, and pasta make up 25% or less. Or declare a few days a week “meat free.” When you do buy meat, try to buy grass-fed and antibiotic-free. Eat inflammation-fighting superfoods. You are feeding your organs great nutrients when you build your diet around deeply-colored fruits and vegetables, nuts, whole grains, fish, and lean dairy. Flaxseed (grind them and put them in or on everything), chia seeds, yogurt with active cultures, beans (rinse canned beans to reduce sodium), sweet potatoes, blueberries and cranberries, unsalted nuts, and eggs (more white than yolk) are all good choices. You are stressing your organs when you eat large quantities of meat, “white” carbs, sugar (not from fruit), greasy, fatty, or processed foods, and high-fat dairy. Eat “brain foods” to stave off those “senior moments.” Food proven to help your brain also happens to be generally good for you anyway, so power your diet with fish (especially salmon, though not every day, due to mercury content), dark greens, Greek yogurt, green tea, coffee (yes!), and dark chocolate. Talk to your doctor about adding vitamin B12, turmeric, and fish oils.

Avoid “emotional eating.” Bingeing on fatty, sugary, salty food and drinks to “eat your feelings” will only make you crash and feel lousier. So buy a blender. Next time you want to plop down in front of the TV with a pint of Ben & Jerry’s, make yourself a smoothie instead with ice, fresh fruit, low-fat milk or yogurt, a dollop of natural peanut or almond butter, and a squirt of honey.

Quit this There can be no argument that smoking causes lung cancer. But did you know it’s also linked to anal and other cancers and bone disease, all of which HIV-positive people are at risk for? Research shows that the single greatest risk factor you can add to those of aging and HIV is to smoke. Cut out this factor and, with every passing day, you are giving your organs—not to mention your whole body—a break. It’s also been proven that the minute you stop smoking, inflammation in your body plummets. There are so many tools to help you quit these days—everything from prescription drugs to the “patch,” to acupuncture, to electronic cigarettes. You can even download one of the many apps available now to personally coach you into quitting, day by day! Have you Googled “smoking cessation” plus your city yet to find programs near you? No Internet? Call 877-44U-QUIT or 800-QUIT-NOW.

Do this Exercise has been shown to lower stress, improve cardiac function, stabilize blood sugar, increase bone density, and fight cognitive impairment, inflammation, and depression. Research has even linked exercise after cancer treatment to better health outcomes down the line. But like most good things, you can do harm with too much (or the wrong kind) of it. Before you embark on a new exercise program, talk to your doctor and make sure your body can handle it. You don’t have to join a gym or hire a personal trainer—cancer survivor Shirlene Cooper recommends walking everywhere and Stephanie Brooks-Wiggins walks her dog for exercise. If you sit all day at work, break it up with little walks, as short as 10 minutes apiece. And if you feel able, do some weight-bearing activity. Fitness expert Nelson Vergel notes that just doing push-ups or squats will improve bone density. And on the other side of the coin, sleep can be a POSITIVELY AWARE wi nter 2 013/2 014 23


major factor in brain health and also in dealing with depression. If you have trouble sleeping, talk to your doctor—there may be simple solutions.

leading to more inflammation. By reducing your viral load, you can help reduce inflammation as well.

Choose this Take this The benefits of adherence to an HIV medication regimen are well known—HIV that’s suppressed to undetectable levels is unlikely to progress to AIDS; lower viral load leads to fewer opportunistic infections; and transmission risk is greatly reduced by having an undetectable viral load. But your HIV meds can also help you in other ways. Dr. Urbina notes that taking your meds early and correctly can help with cognitive impairment. “There’s evidence now that if you start HIV meds early in infection when your T-cells are high, you have a better chance down the line of killing off HIV in the brain area than if you wait until T-cells are low.” And research shows that the lower your T-cells drop before you start HIV treatment—especially below 200— the higher your risk for getting cancer down the line. Last but not least, the more active HIV you have in your system, the harder your immune system has to fight,

It is in the area of “connection” that HIV-positive people may have specific concerns that others may not have. Stigma, fear of rejection, job insecurity, shame. Yet, everyone will tell you that getting “connected”will keep your mind sharper, your will to live stronger, and your body healthier. Our “pros” agree. Whether it’s Reginald Brown saying we need a passion in life or Jane Fowler calling it a mission; Nelson Vergel urging us to care for our mind and our soul (and have sex!) or Stephanie Brooks-Wiggins choosing activism with OWEL; Phill Wilson finding strength in his relationships with family and friends or Sean Strub reminding us that love will always be stronger than any virus, one thing seems clear—no matter how successful we are at eating right, exercising, not smoking, or taking our meds, we still need the indefinable healing magic of human connection.

CUT HERE

GET AND GIVE POSITIVELY AWARE. ❑ 1-year subscription: $30 donation.

❑ Order bulk copies.

Six bi-monthly issues. Subscriptions are mailed free of charge within the U.S. to those who are HIV-positive.

(U.S. only) Available free of charge; however, we ask for a donation to cover shipping. No overseas bulk orders. Minimum order 10 copies; shipped via UPS. (No P.O. Box addresses): ______ copies

❑ Sign me up for PA Weekly. Positively Aware’s free email newsletter: ________________________________

EMAIL ADDRESS

❑ I wish to donate: ❑ $25 ❑ $50

❑ $250

❑ $100 ❑ $_______

❑ $500

Your contribution helps provide subscriptions to people who can’t afford them. Donations tax-deductible.

❑ Order back issues: $3 per copy.

Enclosed is my payment. Select issues below:

JAN+FEB 2014

NOV+DEC 2013

SEP+OCT 2013

Summer 2013 (PrEP)

JULY+AUG 2013

MAY+JUNE 2013

____ copies

____ copies

____ copies

____ copies

____ copies

____ copies

Bill to:

Ship to:

Card Number

Expiration date

Name security code

Agency and title (if applicable)

Name on Card

Address

Signature (required)

City

State

Phone

e-mail

Charge my:

❑ Visa

❑ MasterCard

❑ American Express

total amount: $___________ Charges will appear on your credit card statement as TPAN-PA. Test Positive Aware Network (TPAN) is a not-for-profit organization dedicated to providing support and information to all people affected by HIV.

24

wi nter 2 013/2 014 POSITIVELY AWARE

Zip

Mail to:

Positively Aware

5050 N. Broadway St., SUITE 300 Chicago, IL 60640-3016

Photo:


THE 50+ ISSUE

Embracing the Age of Wisdom You’ve gotten this far—perhaps farther than you ever thought possible when you first received your diagnosis—and now you know more about continuing on, helping yourself to handle, in the healthiest ways possible, all the things that getting older with HIV brings. Perhaps all of the “pros” quoted in this issue are holding the thread of the answer to the question of how you can really embrace your “golden years.” Whether they’re talking about taking your meds, eating well, staying active, or connecting to others, there is one thing that acts as the glue that holds it all together—wisdom. Every choice, “good” or “bad,” we make and every experience we have are lessons we can learn from if we choose to and with each lesson comes wisdom. On the way to the day when a cure is found and an “AIDS-free generation” is indeed within reach, it is the accumulated wisdom of our HIV-surviving elders that will provide the lifeboat that will carry the young ones over the rough water. Maybe a story can illustrate it best: A man named Joe was walking down the street and fell into a manhole. There was no obvious way out—no ladder, no rope, no handhold—the only thing he could do was shout for help. As he yelled, “HELP! I’m stuck down here!” a doctor walked by and said, “Sorry, I’m too busy, but here’s a prescription,” and a slip of paper floated down to the man—a prescription for anti-anxiety meds. Next, a priest walked by. “Father, can you help me get out of here?” Joe shouted. “No, my son,” the priest replied. “I’m on my way to church, but I’ll light a candle for you when I get there.” The next person who passed was a friend of Joe’s. “Hey, Jack! I’m stuck down here and I need your help!” yelled Joe. The next thing he knew, Jack had jumped down into the hole with him. “What the hell do you think you’re doing?!” Joe asked. “Now we’re BOTH stuck down here!” Jack smiled and said, “Yeah, we are. But I’ve been here before and I know the way out. Come on, follow me.” If a 27-year-old finds out he or she is HIV-positive and is lucky and resourceful enough to seek out a 60-year-old longterm survivor, they can learn

from that elder’s wisdom how to survive to the age of 60 and beyond themselves. So instead of hating every wrinkle or gray hair, cursing the way your knees creak when you get out of bed, or bemoaning those “senior moments” when you can’t remember why you went into the kitchen, give yourself the respect and appreciation you’ve given all the “teachers” in your life. Embrace your age, embrace wisdom, embrace life!

POSITIVELY AWARE wi nter 2 013/2 014 25


WE KNOW

HIV/AIDS MEDICATION THERAPY But we also know you prefer pedaling over pumping gas. Welcome to a pharmacy that gets to know you, not just your diagnosis. We’re not just treating HIV patients, we’re getting to know individuals. So no matter the level of support, guidance and confidentiality you prefer, we’re here for you.

To learn more about our support services, visit HIV.Walgreens.com.

©2013 Walgreen Co. All rights reserved.

13CS0036-1013

Positively aware the 50 issue (clickable)  

The 50+ Issue: Older+Fabulous. By 2015, over half of all people living with HIV in the U.S.—roughly 500,000—will be over age 50.

Advertisement