18 Simple Tips to Improve Your HIV Drug Adherence

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Tip #1: Take Control.

Photograph © James Myhre

Adherence is the one area of HIV management for which you are fully in charge. It's the place where you can take control—where you have absolute autonomy over the direction your health and well-being takes.

So don't surrender that right to others. Your parent or spouse or roommate should not be the one organizing your pills or refilling your prescriptions. It should be you. Don't stand back from overseeing every facet of your adherence.

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Tip #2: Know the Names of Your ARVS.

Photograph © James Myhre.

It may surprise you just how many people don't both bother to remember the names of their antiretrovirals (or ARVs). "I'm not sure," we'll often hear, "It's those red ones and pink ones, you remember."

Unfortunately, that is not a sign of commitment. Just the opposite, in fact.

As a society, we're often ultra-conscious about the food brands we eat, the clothing labels we wear and the type of replacement parts we buy for our cars. So why not be the same when it comes your ARVs?

Make a point of knowing the names of your pills, know their proper dosing, and know the difference between your ARVs and the other pills you may be taking. Don't leave it to your doctor or a friend to remember. Ask yourself again, "Who is in charge?"

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Tip #3: Peg Your Pill-Taking to a Daily Routine.

Photograph © James Myhre.

Try to stop thinking of adherence as either a chore or a "lifelong burden" you've been suddenly forced to bear. The truth is that adherence is everywhere in our lives. It's those simple, daily tasks we do automatically, often without thinking. They include things like:

  • taking your cell phone with you when you leave home for work.
  • making certain your kids have milk money before sending them to school.
  • brushing your teeth after you finish your dinner each night.

When it comes to ARV adherence, try to peg your pill-taking to a daily routine you do automatically every day.

For example, many people take their ARVs right before (or just after) brushing their teeth. It allows them to space their twice-daily doses exactly 12 hours apart. By pegging your pill-taking to a habitual routine, it will soon become just as automatic and feel just as amiss if you don't do it.

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Tip #4: Keep to a Fixed Schedule.

Photograph © James Myhre.

Particularly when starting off, try to keep your pill-taking to a fixed schedule each day. If you're on a twice-daily dose, do your best to space your doses 12 hours apart.

With the new generation ARVs, the concern is not so much about the early development of resistance. By and large, the new drugs have a far longer "half-life" and remain in your system at a relatively steady level—as long as you don't make a habit of missing.

The issue is really about the bad habits we fall into if we allow ourselves to get lax. If you start off, for example, by taking one dose at 9:00 a.m. and the next at 6:00 p.m., there's a pretty good chance that you'll end up taking one dose "sometime in the morning" and the next "sometime at night." In time, you may forget whether you've taken a dose altogether. It happens. It's human nature.

Always aim high when starting off. Accept that there will be mistakes, and that it's not going to "mess everything up" if you accidentally forget a dose. The most important thing is to build lifelong, good habits. That's the goal.

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Tip #5: Set Daily Alarm Clock Reminders.

Photograph © James Myhre.

Electronic alarm clock reminders are always a good way of keeping on schedule. However, there are two important things to remember:

  • Electronic reminders are not a permanent adherence tool. They are simply meant to condition you to automatically take your pills without "thinking." Try using them for a couple of months and gradually taper off to where your "memory reflex" kicks in.
  • When you hear an alarm, try to stop and take your pills immediately. Oftentimes, when you're on the phone or in the middle of a task, you might snap off the alarm, continue what you are doing, and completely forget your pills. If away from home, try always to keep your pills on you.

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Tip #6: Never Stop Your ARVs. Never.

Photograph © James Myhre.

Side effects can occasionally occur when taking ARVs, and it's important to discuss these with your doctor before starting. If you experience any side effects, do not stop your ARVs. Call your doctor immediately.

It's important to understand that initial side effects are often transient and will dissipate over time. Stopping and starting on your own accord is never a good idea. Avoid "drug holidays" or weekend breaks.

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Tip #7: Keep a Pill Box.

Photograph © James Myhre.

Pill boxes are great. They save time. They organize your pills brilliantly. They allow you to see when you next need to refill your prescription.

But keep it simple. Don't go for a cumbersome, 30-day, counter-top model. A simple, 14-slot unit will suffice. Transparent or translucent pill boxes (as shown) generally work best. With non-transparent boxes, you can sometimes get to the last dose before realizing you've run out of pills completely.

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Tip #8: Keep an Adherence Diary.

Photograph © James Myhre.

An adherence diary allows you to take notes about any problems or missed doses you may have had, particularly during the first 16 weeks. If you've missed a dose, be sure to include any reasons that this has happened—from forgetfulness to the morning rush to a fight you've had with your spouse.

By clearly identifying the reasons, you and your doctor can discuss strategies by which to overcome these barriers and improve long-term adherence.

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Tip #9: Use a Dedicated Water Glass.

Photograph © James Myhre.

One of the biggest challenges people often have is remembering whether or not they've taken a dose, particularly in the morning when rushing to work or getting the kids off to school. Having a dedicated water glass—one that you only use for your ARVs—is an easy solution.

If you’re confused as to whether you've taken a dose, check to see if the glass is wet. If it is, you're okay. If it's not, then you've forgotten.

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Tip #10: Use Visual Cues.

Photograph © James Myhre.

While you're at it, try to pick a water glass that stands out visually. It's not about having a constant, grim reminder about your HIV. It's solely about adherence and normalizing HIV in your life. By having visual cues like this to assist you, you will be less likely to forget.

So for the first 16 weeks, forget the interior décor. Find something that stands out brightly and makes you feel cheerful and positive. Or buy yourself a bracelet, ring or wristwatch that you can wear every day to remind yourself not only to take your pills, but that you're on a new journey—one in which you are fully in control.

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Tip #11: Keep a Set of Back-up Pills.

Photograph © James Myhre.

There is nothing worse than going out and suddenly realizing you've forgotten to take your pills. Storing an extra dose or two in your office desk or in the glove compartment of your car is often the best solution. Always keep bottled water nearby, as well as non-perishable snacks should you need to take your ARVs with food.

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Tip #12: Take Extra Medication With You When Traveling.

Photograph © James Myhre.

Even if you're away for the weekend or just overnight, take an extra day's worth of medication with you. If a flight is canceled or you get extended for any reason, you won't have to worry about missing doses.

Always try to keep your pills on you when traveling and not in your luggage should they get lost or delayed. If you're away for a longer period of time, you can always split your pills between your carry-on and check-in bags.

And finally, if crossing time zones, recalibrate any alarm clock reminders you may have. Don't stress too much about the time change if it requires you to wake up at 3:00 a.m. to take your pills. Current HIV drugs have far greater "forgiveness" than previous generations, remaining at relatively steady levels in your blood stream between doses. Simply narrow the time gap as best as you can, and you should be fine.

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Tip #13: Reorder Your Pills at Least a Week in Advance.

Photograph © James Myhre.

Always plan ahead to avoid running out of medication. Mark the refill date in your calendar or on your automated Task Reminder. Some pharmacies offer their customers free refill reminders by phone or text. Ask around before filling your first prescription.

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Tip #14: If You Miss a Dose, Don't Take Two to Catch Up.

Photograph © James Myhre.

Perhaps the most important thing to remember is that we're all human, and we forget things now and then. So don't beat yourself up if you suddenly realize you've missed a dose.

At the same time, don't double up on your ARVs in an effort to "catch up" if you miss a dose. Instead, make a notation in your adherence diary and take your next dose on schedule.

Likewise, if you're planning for a night out on the town, never take two doses at once thinking that it will somehow "make up" for missing the next morning's dose. Sadly, it doesn't work that way. Simply plan ahead and use your best judgment.

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Tip #15: Be Honest With Your Doctor.

Photograph © James Myhre.

The management of HIV can be both a positive and empowering experience to those who step forward and become an active partner in their own therapy. Maintaining an open, honest interaction with your doctor is key to this.

Try not to "please" your doctor by providing what you believe to be the "right" answers. Instead, review your adherence diary with your doctor and discuss ways to overcome any barriers or problems you may be having.

And try not to let things go unspoken. If your doctor fails (or forgets) to discuss something important, bring it up yourself. Remember that your doctor is human, too, and it sometimes takes a while to build a successful relationship. Whatever you do, don't sit back, don't hold back, and don't be shy. Be honest. The only real "wrong" is not speaking at all.

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Tip #16: Seek Help if You're Depressed or Have a Substance Abuse Issue.

Photograph © James Myhre.

Maintaining adherence when you are depressed or have a substance abuse issue can be incredibly difficult, if not impossible. If you have a problem, discuss it with your doctor and seek help. Work together to find a solution. You may, in fact, find the means by which to address adherence while dealing with these issues. So don't try to hide it or keep it to yourself.

If left untreated, there is a greater likelihood that you will either default on adherence or give up completely, thinking, "What's the point?" Ultimately, your state of mind-and your sense of well-being-will determine how successfully you can adhere to your ARVs.

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Tip #17: Don't Isolate Yourself.

Photograph © James Myhre.

In the same vein, maintaining adherence in complete secrecy is tough. Issues of privacy and the fear of stigma can sometimes prevent people from taking their ARVs at work or in public places. And if the problem is at home, the issue becomes all the more complicated.

In the end, your doctor cannot be your only support system. Even if it's to reach out to a friend or a support group, the process of disclosure provides you an emotional outlet: a way to keep your bearings and to bring to light any fears that might otherwise overwhelm you.

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Tip #18: Get an Adherence Buddy.

Photograph © James Myhre.

Yes, the goal of adherence is to become self-reliant and feel completely in charge. But you don't have to start there. If dealing with emotional issues or feeling overwhelmed by the sudden flood of information and "rules," take a deep breath and find someone to help you.

An adherence buddy can call you up, remind you to take your pills, take adherence notations, and even sit with you on your first couple of doctor visits. This is not meant to be a permanent relationship, but rather one that eases you into the process until you're better able to take the reins yourself.

And you will. A little help from a buddy is sometimes all a person needs.

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