The Challenge of Commitment or a New Way of Thinking About Adherence

What is adherence? Well the medical definition is, “the extent to which a patient’s behavior coincides with an agreed-on regimen”. Translated into everyday words this means, “How committed are you to taking pills?” Are you committed to taking all of your meds, all of the time, at the right times, with or without the right foods and fluids? Only you can answer this question. It will also require you to think about what is or isn’t really important to you. And it will require you to be completely honest with yourself and your care provider.

This is easier said than done. For me, it meant exploring my beliefs about living and dying. (Not something I enjoyed.) I had to choose whether quality or quantity of life was more important. One dear friend of mine who has a small child really wants to see her daughter graduate, go to college, get married, and produce grandbabies. Quantity won out hands down. However, another dear friend of mine has chosen to eat, drink, and be merry till the very end. She chose quality. It’s your call; there are no right or wrong answers.

What if I want both? Is that possible? The good news is “a definite maybe”. The bad news is, “life holds no guarantees”. While fighting the same virus we are all individuals and each of our immune systems may respond somewhat differently. So why is your doctor is so worried about adherence. Because it’s really important! Medical scientists know that it takes about one hour for your meds to be absorbed (or taken in by the body). Your meds are the most potent about 1 hour after you take them, then they slowly lose their effectiveness over time. Depending upon the medication you are on, this may happen over 8 to 24 hours. Medical scientists also know that a set amount of each drug is required to stop the virus from copying itself (replicating). The trick is to take your pills often enough that there is always plenty of medication in your system to stop the virus.

So for example, if your on Crixivan (indinavir) at 8:00 am and then 8 hours later, at 3:00 pm you take it again, you will have sufficient drug levels to stop the virus for 16 hours. But if you fall asleep in front of the T.V. right after dinner and don’t wake up till 5:30 in the morning, (missing your 11:00 pm dose) your medication blood levels will have fallen below the amount that can suppress the virus. When this happens you are giving the HIV a helping hand at learning to recognize the medicine, build resistance, and possibly increase your viral load. I don’t know about you, but I have no intentions of helping HIV get the best of me.

A 1999 study involving 84 participants showed that those who where at least 95% committed to (adherent to) protease inhibitors were able to keep the virus suppressed below detectable levels. The participants’ viral loads were followed for one year and electronic bottle caps recorded how often and at what time pills were taken. As participants were less & less committed to the meds viral loads went up. Participants who were 80% committed had a 50% chance of viral break through, and those that were 70% committed had a 94% chance of measurable viral load. This really shows that you have to be very committed to taking the medications in order for them to work .

Taking medications all the time is difficult and it can be made even more challenging because of side effects. Another study done in a Florida prison showed that the more committed you are to taking your meds, the fewer side effects you are likely to have. The participants in prison were given their meds at regular times and watched while they took them. The other study participants were on the outside and had to remember to take their medications for themselves. Eighty percent of the inmates were able to keep the virus suppressed while only half (50%) of the people on the outside saw viral suppression. Here’s what I find really interesting: those in jail, who it seems would be getting more of the drugs in their system, had fewer problems with side effects. We don’t know for sure, but it suggests that some of the side effects are due to the ups and downs of the drug levels. The more constant your drug level, the fewer the side effects. That motivates me to take them on time, every time!

That leaves us with the issues of food and drink. What does it mean to take my medications on an empty stomach? An empty stomach means you cannot eat 2 hours before you take your meds and you must wait for 1hour afterwards to eat again. Can you drink whatever you want? Yes, there are no real fluid restrictions, but being mindful of what you are drinking is helpful. The medications we take keep our livers working hard. We can help our liver stay healthy by drinking plenty of water. (It is crucial to drink 2 litters or 64 oz of water daily if you take Crixivan.) Drinking alcohol and caffeine in moderation will help the liver; also alcohol will change how well your meds are able to work. Another drink that has been questioned is grapefruit juice. You can drink grapefruit juice, but it is best if you don’t drink it with your pills (wait an hour or so). And how in the world can they expect me to keep my lipids and triglycerides (fats in the blood) in check when I am supposed to eat 24 grams of fat every time I take my Fortovase (saquinavir)? This is a hard one, but some fats are better than others. Talk with your provider or a dietician for help.

We have come a long way and there is hope! It’s about personal commitment. Figure out what you want and how committed you are. You may not be ready to take medication. You may be using street drugs. It is far better to wait than to start and stop. Indecision helps the virus to mutate. Be honest with yourself and your provider. Remember there are no right or wrong answers, just workable solutions for you. So get talking with your provider, work out a plan, and make a realistic commitment!

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