HIV Treatment: The Importance of Adherence

One of the prominent issues concerning taking or prescribing combination therapies for HIV disease is adherence (a.k.a. compliance). Adherence has been defined in many different ways. For example, Lois Eldred, formerly from Johns Hopkins AIDS Services, defines adherence broadly "as the extent to which a patient's health-related behaviors correspond with medical advice." Among these health-related behaviors, keeping medical appointments and taking prescribed medications are especially relevant for HIV disease treatment. In this article, I have that definition of adherence in mind.

Adherence is vitally important because medications used in current combination therapies need to be at blood levels high enough to be effective, and that only happens when one follows the prescribed dosage precisely. Also, nonadherence can lead to the development of HIV mutations resistant to the medications you are taking. In many cases, this may lead to resistance to medications you have not taken yet, but which are from the same class of those you are taking (and perhaps not adhering to), a phenomenon known as cross- resistance.

Patients and Providers Must Work Together

Most experts say that to have a successful adherence outcome, it takes a concerted effort between patients and health care providers. Nonetheless, few people think about strategies to get there that will maximize their chances for success. That it is true for both patients and health care providers. We tend to think of adherence as a kind of personality trait: Some people are good at it, some are not. However, this is only half of the story: There are things patients and health care providers can do to enhance adherence to HIV medications. In the next few paragraphs, I will go over some of the issues you want to think or talk to your health care providers about to increase your adherence to your therapy regimen.

First of all, this is not a doctor vs. patient thing. It is about patients and health care providers coming up with the best strategies so that chances of success are increased. Patients are not bad if they don't adhere; doctors are not mean if they expect adherence from their patients. Doctors cannot possibly know whether patients will adhere to the regimen agreed upon or, if so, for how long. However, some could venture educated guesses on the topic. The bottom line is that nobody knows for sure.

It is reasonable to assume that most people who decide to start their combination therapies want them to work. Since adherence is fundamental, once people know how necessary it is, they will want to adhere to their agreed-upon prescribed regimen before they start their regimen, right? However, the situation may change after one actually starts taking the medications. At the moment, the treatment of HIV disease is a long-term enterprise with strict guidelines in which it is not clear for how long full adherence to a complex regimen will be necessary. So when dealing with the unknown, we need to be conservative and aim at 100% adherence.

Most of the research done on adherence to therapy regimens has been done with other illnesses and not with HIV infection, but some of what is true for those other illnesses is true for HIV disease as well. It seems that one of the biggest problems is that when we perceive we are well, we don't take our medications (we think we don't need them any longer, and if the "symptoms" come back, then we will take the medications again!).

With asymptomatic HIV disease, since there are no "symptoms" to begin with, it is hard to gauge one's wellness; therefore much is left to more "objective" data such as lab tests (i.e., viral load and T-cell counts). For those who are asymptomatic, doctors and patients need to be clear on whether patients and doctors (please see "Questions To Consider") are ready to initiate and adhere to their combination therapy of choice. If there is insufficient adherence, resistance might ensue. For those who have symptoms the same applies, but there might not be as much flexibility in terms of when to start (or change) a combination therapy. The patient might need it sooner rather than later and cannot wait for the optimal moment to start his or her combination. In any event, if symptoms go away, the medication cannot be stopped.

Patient and doctor need to be ready: the patient to make room for HIV medications in his or her life, the doctor to make room for a patient who might need extra attention for the first two or three months -- a period that most experts agree is crucial for long-term adherence. We also need to make a committment to adherence before we start any regimen, since nonadherence is verified across the board with HIV and non-HIV-related diseases. Doctors and patients should be clear about possibility of needing to change to a different treatment and regimen if the current one is unsuccessful.

With HIV there are also side effects that, in some cases, are hard to manage. Things could be a little difficult with side effects, especially when you start a new regimen, but they do tend to be less of a problem as you go along. Nonetheless, if they are too difficult to manage, it is important that you and your doctor talk about it and decide what to do.

It makes sense that the first couple of months are critical for a successful outcome. This is the period we are making room for the medications in our lives, the time when side effects are most difficult to deal with either because our bodies are adjusting to the new medications or because we are adjusting emotionally to varying degrees of side effects. Since these first months are crucial, you and your health care providers should schedule a couple of follow-up visits (or talk on the phone) to see how you are doing with your new therapy.

It is also important that you know on whom you can count if you have a difficult day. If you don't have a network of support at hand, you can always join drop-in support groups at Body Positive or at any other organization near you. If you are not feeling well enough to go to a support group and don't have a network of support, you can always call help lines from several organizations. They might be able to help. Ideally try to set up a network of support for the rainy days before you start your combination therapy.

Another problem is forgetfulness. Combination therapies include many medications with different food restrictions and requirements that might not be easy to coordinate. You can try many different approaches, such as pill boxes, pill boxes with alarms, beepers, etc. Again, brainstorming what is most effective for you is necessary. This can be done with your health care providers, friends, support groups, etc. Don't forget to talk about forgetfulness before you start treatment.

If you are actively using drugs or alcohol, you need to think about what you want to do. It is your decision when to start a new regimen, but it is also your responsibility to stick to it as closely as possible once you decide to do so. Can you stick to the treatment and not forget to take your medications when you are high or drunk? Remember: Skipping dosages is really bad news for those who are taking protease inhibitors. Medication holidays might become medication nightmares if resistance or cross-resistance ensues.

On top of that, some "recreational drugs" have known and unknown interactions with protease inhibitors. Again, you have the right to start taking your medications when you decide to go on them, but it is your responsibility to stick to the regimen as closely as possible. Combination therapies can be an incredible health booster (as the decrease in AIDS-related deaths indicates), but you and your health care providers need to make this deal work. The quality of your life is at stake.

Although your doctor might not be able to tell whether you will adhere to your HIV medications, you might be able to figure out some of your weaknesses and strengths and work on them.

Now I am going to suggest something that might sound silly to you but some people have reported quite helpful. Once you and your health care providers decide which combination therapy is the most appropriate for you, you might want to rehearse with Tic-Tacs. Take the Tic-Tacs for a week as if they were your real medication and see how that goes. Can you incorporate the Tic-Tacs (medications) into your daily life? How do they go with your eating and sleeping habits? Do you need to make any changes or adjustments? Finally, research has shown that there is no one single approach to good adherence. A combination of approaches works better than simply one -- the same way, in the treatment of HIV disease, combination therapy works better than only one medication. It takes both patients and health care providers to do the job, although the patient is the one taking the pills.

Questions To Consider When You Are Deciding To Go On Combination Therapies

  • What's your past history taking medications prescribed by a doctor, as opposed to over-the-counter medications?
  • Can you follow doctor's recommendations closely?
  • Do you take drug holidays?
  • When you feel well, do you stop taking your medications?
  • Do you feel comfortable enough with your doctor that, just in case you miss your medications, you will be able to tell him or her?
  • If not, do you know why? Is it your doctor? Is it you? Both? Is there any room for improvement?
  • How do you deal with side effects? Diarrhea? Nausea? Headache? Can you usually manage them? Can you ask for help?
  • Do you feel comfortable talking to doctors or health care providers about side effects?
  • Do you feel comfortable talking to friends about side effects?
Back to the April/May 1998 Issue of Body Positive Magazine.