Adherent While Healthy: My Tips for Remembering Daily HIV Meds

George M. Johnson
George M. Johnson

Take one pill a day to save your life.

This should be easy to do right? You go to the doctor. You get on treatment. You take your medicine every day. You stay healthy and thriving. For those who are HIV positive, you are working towards that goal of being undetectable. If you are on pre-exposure prophylaxis (PrEP), you are taking the first step in staying HIV negative. But what happens when this daily, at times robotic, process of taking medication starts to become an afterthought once you begin feeling healthy? Treatment adherence can at times be a tough pill to swallow.

For many others, and me, there are definitely days that we forget to take our medication. Some days you get busy and never think about it, others you simply forget or leave your medication at home and just forgo it to not throw off your schedule. When you initially go on treatment, it is with a set goal in mind. For those who are HIV positive, that goal is to reduce the viral load to undetectable while also increasing the CD4 count and percentage. For many, this will occur within the first year of treatment. Then the doctor visits become mostly routine as you maintain an undetectable status and make sure your labs are regularly being done. You reach a place where you feel healthy, and that is when the problem starts.

You may be used to thinking of medicine as something to get off once you reach a healthy place. For instance, when you have a headache, you take a pill until the headache goes away, and then you don't take it any more. When you feel you are getting a cold, you take medicine until you feel the cold has ended.

It isn't the same with antiretrovirals and PrEP. When you reach the goal of undetectable, you can't just stop taking your medicine. You have to continue taking it for the rest of your life, even though you may feel fine. That's not an easy thing to do. When on PrEP, you are taking it as a preventive measure, so the goal is to not contract HIV from appointment to appointment, but again there is no fixed end date on taking the medication.

Yet, there are adherence tricks for those of us who must take pills for the rest of our lives. Due to the various factors that have caused me to miss a day, or a few, I have practices I follow to ensure that it doesn't happen often -- or at all.

1. Using a Pill Box

The weekly pill box is a great way to remember if you took you daily pill. It has seven slots for the days of the week. At the beginning of the week, you fill it up and keep it in a place that you know you will see every day. If you look at the day and the pill is still there, you have to take it. Pretty easy.

2. Putting the Pills in a Different Bottle

I used to be scared to have my pill bottle in the open where people could see it -- especially with the stigma that comes with being on treatment. So, I would put the pills in a different bottle, so they could hide in plain sight. This helped me gain the confidence to take my health into my own hands and fight my internalized stigma.

3. Setting a Calendar Reminder

I have a daily reminder that comes up on my phone at the same time twice a day to tell me to take my medicine. If you are afraid of someone seeing it pop up on your phone, give it a code name that only you know, so there is no fear about your privacy.

4. Getting Your Refills on Time

A lot of insurance companies only offer 30-day supplies. When you start the last week of pills, it is imperative that you go get your refill. This means being in contact with your doctor to make sure your prescriptions are being sent to the pharmacy on time. I also advise people to see whether they can get a 90-day supply. This will help your supply management, as you can place your order once you get down to your last bottle.

Adherence is so important in the prevention and treatment field. Using treatment as prevention is where much of the funding has shifted and will continue to go as we push into the next stage of the epidemic. As PrEP initiatives continue to grow worldwide and treatment of people who are HIV positive and undetectable continues, keeping both populations adherent is going to be key to living in a world without HIV.