Word on the Street: Advice on Adhering to HIV Treatment

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Staying on top of your treatment every day is not an easy task. Annoying side effects, being disorganized and the hustle and bustle of life can stand in your way. So we took to the streets to ask HIV experts and people living with HIV to talk about why adherence is important and to share strategies for ensuring you remember to take your meds.

Nelson Vergel, Houston, Texas; Diagnosed in 1986

  1. Before you start, take a once or twice a day vitamin if you have never taken meds before. This will get you used to the schedule.
  2. Get an alarm watch.
  3. Get a pill box so that you don't have to open bottles every day.
  4. If you take Atripla, remember to take it on an empty stomach. Placing it next to your toothbrush will help you remember to take it before bed (at least 2 hours after dinner).
  5. Set phone alerts through phone apps like BugMe or Google Calendar.
  6. Sign up for TheBody.com's Personal Reminder Service at thebody.com/reminders to get text messages when it's time for meds, doctor's appointments, refills, etc.
  7. Make sure your pharmacist can call you to remind you of refill time.

Millicent Foster, Baton Rouge, La.; Diagnosed in 2002

My advice is to find what works for you and stick to it. Have a friend or family member to call you to remind you to take your meds. This worked for me in the beginning. Remembering to take your meds is one of the hardest things to do, especially when you aren't used to taking medication.

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I don't have any fancy tricks that I use to take my meds. I take them mostly in the afternoon when I eat lunch. The regimen that I am on now is so easy to take and there are no side effects with it. I keep my meds in the kitchen on the counter next to my box of Oregano Gold Green Tea, of which I drink a cup twice a day.

This is the easiest regimen that I have had since my diagnosis. I used to take my meds at night so I didn't have to deal with the side effects; now I take them in the middle of the day with the same results.

Philip D., San Francisco; Diagnosed in 2007

I find that pairing my medications with something I enjoy helps me to remember to take them. These days, I associate a dose of Complera with decadent dessert, often made with fine, dark chocolate. Although a stale Hershey bar will do, in a pinch.

Reggie Smith, Atlanta, Ga.; Diagnosed in 1984

I've been sick and at death's door. When you've had that kind of experience, or if you've lived as long as many of us who are longtime survivors have, the motivation to adhere to our medicine regimens is rooted in gratitude. I try to remember what it was like being sick and how much more enjoyable my life is when I'm feeling physically well. Life is so much sweeter, and I'm so much more of a productive human being, when I'm not consumed with how to overcome sickness. Besides, many of us longtime survivors are now grandparents, so the curiosity of how my grandchildren will look and be as they grow up is keeping me going too!

Antonio E. Urbina, M.D., Associate Medical Director, Center for Comprehensive Care, St. Luke's-Roosevelt Hospital Center, New York City

The best tool to support adherence is extra encouragement and support, in particular from friends, partners and families. Lifelong adherence to HIV meds is tough but with trusted support in your life taking HIV meds can become more manageable. Ask friends, partners, or family members to give you a call and remind you to take your medications, help you fill your pill box, or cheer you on when you are having a bad day and just don't feel like taking your meds.

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As we know, better adherence leads to less inflammation in the body and this, in turn, will not only prevent HIV from wearing down on the immune system but also protect the heart, brain and kidney from the damaging effects of HIV. And when you decrease inflammation, you greatly slow down the aging process -- looking younger and healthier!

Evelyn Hernandez, Palm Springs, Calif.; Diagnosed 1993

I have my own little routine. I take my meds when I eat dinner. And that's what I do every single day. So, my recommendation is to take your medication when you're less stressed, like when you're at home. If you're working, there's so much going on in the office that it may not be a good time. Breakfast might not be a good time, because you might have to deal with side effects that will impact you throughout the entire day. I tend to take my medications at night, because if I do experience any side effects, I can sleep through them. Just adhere to your medications.

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Also, bring a list of questions to your doctor. Because a lot of times you have questions that you forget when you're there. I'm prepared and I'm like, "Okay, these are some of the things I've been experiencing." Also, keep a journal. A journal is always good, especially for those emotional, challenging days. And write. And surround yourself with positive people. Keep the faith, because you can get through this.

Tree Alexander, Brooklyn, N.Y.; Diagnosed 2006

I make sure that I take my medicine at the exact hour and exact minute that I'm supposed to, because I don't want any gaps. I take my meds as soon as I wake up. My alarm goes off at 5:30. At 5:30, I roll over and take my medicine [which consists of Reyataz, Combivir and Norvir] whether I get up or not; some water and my medicine are right there next to the bed, so I take it right then and there. Then my PM medicine I'll take during the day. But it's the Combivir that I take twice a day. I'll take just the Combivir with me in a small, discrete pillbox. I'll take it during lunch or when I'm having an early dinner. I have an alarm on my phone that'll go off to remind me to take it.

Ed Viera Jr., New York, N.Y.; Diagnosed 1989

I put my meds right next to the coffee machine. Every morning, I can't miss it. I don't leave the house without having my cup of coffee, so I put the pillbox right there. Actually, I'm looking at it right now. I have it, in a place, on top of a jar, next to the coffee maker. No matter where I am in the apartment, I always see it. It's within eyesight at all times so I don't miss it. I don't have any kind of special tricks. I used to have a watch that would keep on beeping to remind me it's time to take this medication; it's time to take that one. I took the watch and threw it out the window.

Kay D., Colorado; Diagnosed 1992

Make your habits work for you. It's hard to remember to take your meds if you're not used to the routine. If you know that you wake up every morning and have coffee, set your meds next to the pot of coffee. I am certainly not an advocate for smoking, but let's be realistic: A lot of HIV-positive people smoke. If the first thing you reach for in the morning is your cigs, put your meds on top of them. I turn my computer off every night, so my meds are right next to my computer.

Rafael Abadia, Palm Beach Gardens, Fla.; Diagnosed 1993

I change methods from time to time. I have my big pill organizer for the week, so I just put my meds and my vitamins in there once a week and it's easy. But sometimes I just get tired of seeing all the pills together, so I go back to just picking them out every day. So I change from time to time, but I always take them.

Ed Perlmutter, Boston, Mass.; Diagnosed 2006

Making it part of a routine and a ritual of sorts has helped me to take my meds consistently. I take my meds at night, say my prayers and go to sleep.

What helps me to keep them organized is one of those little pill pour containers. Every Saturday, I take my vitamins and my cocktails and I portion them out for each day of the week. So, when it's time to take everything, I take them all together and gulp like 12 pills at a time. That way my meds are not separated from my other pills. This method is so much better than opening a lot of bottles.

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When I take my pills and pray, I am not praying to Big Pharma. I am praying to science and praying for my health. I am also thanking God that I have these meds, because without them the virus would be spiraling out of control. Without them, I would be dead.

Taking these meds is like a diabetic taking their insulin. So please do not take the meds for granted and do not make a ritual of taking them for granted.

Joel Gallant, M.D., Professor, Johns Hopkins School of Medicine, Baltimore, Md.

With most of the HIV drugs we use today, taking medications on time isn't nearly as important as just taking them. For example, it's more important to take Reyataz, Prezista and Edurant with food than at the same time each day, while Sustiva and Atripla are often better tolerated on an empty stomach.

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A pillbox is critical. Many people think pillboxes are only for people who take a lot of medications, but even if you're just taking one pill a day, you should use a pillbox that separates your pills by the day of the week. With a pillbox, you never have to wonder whether you took your meds or not.

Link medication doses with daily activities. If you take your meds with food, choose the meal you eat every day, preferably at home, and store your pills in the kitchen. If you take your meds in the morning or at bedtime, put your pills next to the toothpaste and take them when you brush your teeth.

In most cases, it's better to take your medications late than to skip them completely. That may mean taking a dose at breakfast if you forget the dose you usually take at dinner. The exceptions are Atripla and Sustiva, because morning doses can cause daytime side effects.

Finally, don't panic if you accidentally miss a dose once in a while. Most of the drugs we use today last a long time in the blood, so the occasional missed dose won't cause you to fail therapy or develop resistance. That's especially true once your viral load becomes undetectable; skipping doses is riskier during the first few months of therapy. Missing multiple consecutive doses is worse than missing a single dose, especially if you're taking NNRTIs (Sustiva, Atripla, Viramune, Edurant), so don't go away on vacation without bringing enough pills, and don't wait until Saturday night to find out that you need a refill on Sunday.

Efrain Carrasquillo, Bronx, N.Y.; Diagnosed 1990

One of the difficulties to adhering is admitting that, for the rest of my life, I am going to have to take meds. I guess that's one area you can't tell yourself, "I only want to take meds for the next 6 months." You can't do that. That is not the case. You can grow resistant. And that keeps me motivated; all together, my health is good and I don't want to lose my health. I love myself like that.

Ben Young, M.D., Ph.D, Executive Medical Director, Rocky Mountain CARES, Boulder, Colo.

People sometimes worry about hitting the bull's-eye every time, every dose. It's not necessary with today's medications. (We get this question a lot in my "Ask the Experts" forum.) What is essential is to find the easiest, or most reliable, part of the day (or night) and stick with it (give or take a few hours). Try a pillbox, or clock reminder. Some folks use their email or text messages to help. Link taking your medication to a routine, daily activity: brushing teeth, checking email, going to the bathroom, eating, etc.

Robert Breining, Philadelphia, Pa.; Diagnosed 2007

Here are some of my best tips:

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  1. Use an alarm on your cell phone or watch. Using a beeping watch or timer to remind you when a dose is due is the easiest way to adhere to your medications.
  2. Use a pillbox. Counting out your medication and using a pillbox will allow you to see if you remembered to take your medication for that day.
  3. Use a daily planner. Just like an appointment, add your medication doses into your daily planner to remind you when a dose is due.
  4. Always plan ahead. If you are going away for the weekend or on vacation, plan ahead. Pack your medications for the entire trip.
  5. Establish and use your support network. Friends and family members have reminded me a number of times to take my medication.
  6. Use Post-it notes. I have used this a number of times when I found myself forgetting to take my medications.
  7. Take them at dinner. I have recently switched to taking my meds at dinnertime. I found it to be easier to remember to take them when I am eating. My dinner plate acts like an alarm clock.
  8. Easy access. If you take your medication at night, you may want to leave your medication on the nightstand so they are visible to you before you go to bed.