Your doctor has just recommended that you start antiretroviral treatment for HIV and you are struggling with what to do. You've heard all about side effects from some of the treatments and you have heard talk about "adherence," but you're not quite sure what that means.
Despite the fact that you may have recently developed symptoms and your immune system may be deteriorating, this is not a course of treatment you should begin lightly. It's not something that simply requires that you comply with some prescribed medication regimen. To the contrary, the management of HIV therapy involves an extremely complex process, carried out by you and your health care provider.
Highly Active Antiretroviral Therapies (known as HAART) have restored many critically ill HIV-positive individuals to a level of wellness that could not have been predicted a decade ago. Unfortunately, many persons who are HIV-positive face seemingly insurmountable psychological, social and medical barriers to beginning and maintaining the rigorous treatment regimens of HAART. Overcoming these barriers takes time, and it requires knowledge.
First off, you need to understand that the regimens of antiviral treatment can have complicated schedules along with dietary restrictions. Side effects and drug reactions are common. But once you start, you will most likely be on treatment for life.
Non-adherence to your treatment regimen -- failing to take your medications on a timely basis and as directed -- can lead to treatment failure, the development of resistance to the drugs that suppress your infection and increased progression of your HIV disease.
Adherence to your regimen is all-important. For other chronic diseases such as diabetes or hypertension, a level of adherence at 80 percent is generally acceptable. For HIV, however, the level of adherence required for successful suppression of the virus and improved outcomes requires that you take your medications at a near-perfect rate -- 95 percent of the time or better.
So there you are: Your health care provider tells you that you should take a combination of medications and emphasizes the importance of taking them at the right time, at the right dosage and with the right amount of food. So, what are you feeling when you hear this news? Quite likely, you may be scared and confused about starting treatment. This is a dilemma that just about every person living with HIV/AIDS encounters at some point during their care.
It is extremely important to get all the information you can about HIV treatment, and fully understand the risks and benefits of starting antiretroviral therapy in order to make an informed and knowledgeable decision about your HIV care. This is best not done alone. It is important that you have the assistance of a team. Your HIV care providers can help you put together the members of this team, which could include a health educator, a mental health provider, a HIV-peer support group, and/or a participation in a day treatment program. These are the people who can help you formulate the answers you will need to make decisions along with your medical provider about your treatment.
There are many, many questions you'll need to answer in your own mind, from the very basic -- such as what is AIDS and how does HIV progress? -- to more complicated ones, such as what happens if you develop resistance. Other questions might include:
- Which combination of medications should I start with?
- What options do I have if treatment fails?
- How many times during the day will I have to take medication?
- What are the food requirements and do I need a special diet?
- What side effects should I expect, how can I manage them?
- Can my HIV treatment cause other health problems?
- Will alcohol and other drugs impact my treatment?
- Will I get depressed?
- Should I get counseling?
- What will happen to my quality of life?
Those are just some of the questions you should ask and which others can help you answer.
Tips for Adherence
If you've been told by your doctor that it's time for you to take antiretroviral treatment, it's a good bet that you need that treatment therapy and you need to begin as soon as possible. But you shouldn't start taking HIV medication if you are not ready. It will be difficult to stick to a regimen if you are taking your medications just because your doctor told you to take them. You need to understand the benefit they will give you, despite the problems they may cause. Untreated, your disease will progress faster.
After you've reached a level where you understand what you are facing and you have decided with your health care provider what regimen to follow, then what? Perhaps you begin having difficulties, or you want to be prepared for the challenges of being on treatment as best you can. Below are some tips to help you improve your adherence:
Tailor your regimen. Your regimen should fit your lifestyle, your job situation and your food habits. It is more likely that you will remember to take your medications, and take them on time, when they fit into your daily routine.
Get a reminder system. There are many tools, such as pillboxes and alarms. Some people living with HIV/AIDS even have a combination of reminders. These could include tools such as a weekly pillbox, wearing a "health watch" that beeps when it's time to take your medication, and keeping a medication diary to monitor dosage adherence and side effects. The medication diary entries can be of significant use to you and your health care provider in addressing treatment issues.
Keep a log to record your missed doses. This will help you assess and identify your own personal barriers to adherence. Are you missing doses because of side effects? Because you forgot? Or were you in a situation where you didn't want to let others know your situation? A log will help you determine what's keeping you from taking your medications and how often you are missing doses. You might determine that it's something as simple as the size of the pills, or the number of pills, that bother you.
Get professional support. Just as when you went through the learning stage before starting therapy, ask your HIV-care providers for help, call HIV/ AIDS hotlines, seek out HIV/AIDS resource directories and the Internet to link you with professionals who can offer your support. They will help you confront problems with adherence.
Learn about your side effects and how to manage them. Feeling sick is one of the most frequent reasons people give for stopping treatment.
Seek social support. The support of family and friends who are positively involved in your treatment can help you and be as important as a team of professionals.
Develop a partnership with your HIV primary care provider. Make sure you have a relationship with your provider that allows you to have input in decisions about your treatment.
Keep in mind that adherence is a dynamic process that varies over time among individuals and that it can, and does, fluctuate, depending on what is going on in their lives. That is why you need to be ever-vigilant in your medication management in your battle against the barriers to adherence, which may change over time.
Beyond the mental health, attitudinal and behavioral issues that traditionally affect adherence to medical treatments, there are other barriers that need to be addressed. These include lack of knowledge and understanding of the effectiveness of treatment and the importance of medication schedules. The way you feel about your HIV disease could also be a barrier to adherence.
You should make sure to know the nutritional requirements of your treatment and the impact of side effects and be sure to acquire adherence tools. And get others involved in your treatment -- friends, family and professionals who can help you maintain your regimen, who can be there when things get difficult and on whom you can rely for support and information.
Laurie Newman M.A., M.P.H., a senior research scientist, is the director of Village Care of New York's Treatment Adherence Program. Carmen Rodriguez is a health educator supervisor for the Treatment Adherence Program and a staff member of the Village Care Research Department. Village Care offers treatment adherence services at its AIDS day treatment programs in Manhattan and can be reached at www.vcny.org or 212-337-5600.