The Importance of Adhering to Your Treatment Regimen en español
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An Introduction
HIV treatment is a partnership. Just as you rely on your antiretrovirals (ARVs) to be proven safe and effective, your medications don't work alone—you need to take them correctly if they are to keep you healthy. This is called "treatment adherence."
Generally speaking, adherence means taking the correct dose of your medications every time you're supposed to take them, exactly as prescribed by your health care provider or recommended by your pharmacist (for example, on an empty stomach, before bedtime, etc.).
While adherence may sound easy, sometimes it's not. Studies show that even doctors have enormous difficulty taking even short-term drug regimens strictly according to the rules.
This lesson takes a look at HIV treatment adherence, including why it's so important, some of the issues that can get in the way of good adherence, and ways to overcome these obstacles.
Why is adherence so important?
Adherence is especially important when it comes to treating HIV infection. From the moment HIV enters the body, the virus is constantly active, finding CD4 cells to infect so that it can reproduce. The goal of HIV treatment is to keep a tight lid on this process, ultimately pushing (and keeping) viral loads undetectable and CD4 cell counts high.
To successfully halt HIV replication and keep viral load suppressed, levels of HIV medications in the blood need to be maintained at high enough levels, 24 hours a day, every day. If the levels become too low, HIV can begin replicating. And if this happens while there are low levels of HIV medication in the bloodstream, the virus can change its structure (mutate) and become resistant to one, or more, of the drugs you're taking. This is called "drug resistance" and it can cause your meds to stop working properly and may limit future treatment options. Drug-resistant HIV can also be transmitted to other people, making it harder for them to treat their own infection.
For more information on drug resistance and the new tests to measure it, click on the following lesson link:
The first step is to understand how your current (or future) medications need to be taken. You can ask your doctor or pharmacist the following:
How many pills of each drug am I supposed to take at a time? Most people with HIV now take fewer pills than was necessary when combination therapy first became available. In fact, there's one complete treatment regimen that has three different drugs in a single pill. Other common drug regimens will require you to take between two and five capsules or tablets with every dose, and pill count will be important to consider if you have a hard time swallowing pills.
How many times a day am I supposed to take each drug, and when do I take them? None of the most commonly used HIV drugs need to be taken more than twice a day. Several HIV medications are always taken once a day; others are always taken twice a day. Some drugs can be taken either once a day or twice a day, depending on whether or not you've used other HIV medications in the past (as well as personal preference).
Should I take my pills on an empty stomach, or should I take them with food? Some HIV drugs have food requirements, meaning that they must be taken either with or without food if they are to be absorbed properly. Similarly, the presence of food in the stomach when HIV medications are taken can either lessen or worsen side effects. Fortunately, most HIV drugs can be taken either with or without food—but be sure you are aware of, and follow, any specific food requirements your drugs may have.
Can I take my drugs with other medications I'm taking? And what about supplements, herbs and over-the-counter medications? Many HIV drugs—and medications used for other diseases, along with various complementary therapies and nutritional supplements—can interact with each other in the body. Some drugs can cause blood levels of other drugs to decrease or increase when they are used at the same time (even if they are dosed hours, or even days, apart). This can prevent medications from working effectively or increase the risk of side effects. There is a much lower risk of dangerous drug interactions when your doctor and your pharmacist know which prescription and over-the-counter medications, supplements and herbs you're taking.
What should I do if I forget or miss a dose? It's only human to forget or miss a dose of your medication every now and then. The advice from your health care provider or pharmacist might be to take it, as soon as possible, if it's closer to the time of your missed dose than your next dose. For example, if you're on a once-daily regimen and it's been less than 12 hours since your missed dose, take it immediately. If it has been more than 12 hours since your missed dose, wait until your next scheduled dose. If you find yourself repeatedly missing or forgetting doses, figuring out why this is happening—and what you can do about it—is essential.
What's the best treatment regimen for me?
Choosing, or staying on, the best treatment regimen for you depends on a number of factors.
First, you'll want to make sure you're on a drug regimen that has been proven safe and effective. To learn more about the most trusted drug combinations, take some time to review the following lessons:
Another factor to consider when choosing a new drug regimen—or figuring out if the regimen you're on is right for you—is your ability to take the medications as prescribed. This requires discussing things like your treatment preferences, habits and potential adherence obstacles with your health care provider, to ensure that you're taking a drug regimen that's easy for you and avoids adherence problems.
Following is a list of questions for you to consider when discussing adherence and making treatment decisions with your health care provider.
Do you do the same things at the same time everyday (and evening), or does your schedule change a lot? The answer to this question may help determine when and how many times per day you take your meds.
What is your typical daily eating schedule? Answers to this question could help determine what kind of food restrictions you'd be able to live with.
Is it difficult for you to swallow pills, especially large ones? A regimen with fewer and smaller pills or tablets may be better for you.
What other prescription or over-the-counter medications or supplements are you taking? Some medications can't be taken together, whereas others may need their doses to be changed if combined with other drugs. Make sure your health care provider knows about all medications and over-the-counter supplements you're taking.
Would the potential side effects associated with the regimen you're considering be especially problematic for you? How would you deal with stomach problems like nausea or diarrhea? Would sleep disturbances or morning dizziness make you want to stop taking your HIV meds?
Is easier always better?
Over the last decade, HIV treatment has been transformed. When a combination of drugs became the standard HIV treatment approach in the mid-1990s, many people took up to 20 pills, multiple times a day. Today, some people are using a drug regimen requiring one pill, once a day—a major breakthrough.
While there's no question that regimens consisting of the fewest number of pills, taken the fewest number of times a day, are highly appealing, regimens that are taken only once a day or involve just a couple of pills aren't necessarily easier or better than regimens taken twice a day or involve taking five or six pills.
For starters, a once-a-day drug means once every 24 hours, not once each day at whatever time you remember to take it—for example, one day with breakfast and the next day with lunch or dinner. Waiting too long between doses can cause drug levels to fluctuate in the body, which can lead to the development of drug resistance.
Also, some drugs are rapidly eliminated from the body, whereas others can linger in the bloodstream for many hours—even days. How quickly, or slowly, HIV drugs are processed in the body tells us how "forgiving" some treatment regimens may be if you do forget to take a dose on time once in a while. If you're taking a drug that achieves blood levels that remain above the minimum needed to keep HIV in control for hours after your next dose is due, then that drug is considered forgiving. If a drug rapidly falls below the necessary blood level shortly after the time of your next scheduled dose, it is considered to be less forgiving and requires strict adherence.
In the case of once-a-day dosing, some drugs are much more forgiving than others and this is an important consideration. Plus, a once-daily drug combination may contain both forgiving and less forgiving medications, so taking your medications on time, every time is important.
Results from studies comparing once- and twice-daily dosing, involving people with HIV and other diseases, have been mixed. Though people generally state a preference for once-daily dosing, not all studies have found that people who take drugs once a day have better adherence than people who take them twice a day.
Some experts have concerns that missed doses of a once-a-day drug may leave a person more at risk of developing resistance than missing doses of a drug taken twice a day (or more frequently). This is because blood levels of a drug can fall to dangerously low levels if a person skips a dose of a once-daily drug for an entire 24-hour period than if they only skipped the drug for an 8- or 12-hour period.
Which are the easiest drug combinations? (A look at fewer pills and once-a-day dosing)
Companies have responded to the demand for HIV drugs that require fewer pills, taken fewer times a day. Many newer drugs were developed with simplicity in mind, and many older drugs have been redeveloped to allow for easier dosing. It's also becoming more common to see two or more different drugs combined into a single tablet or capsule.
Drugs that now require fewer pills (officially approved by the U.S. Food and Drug Administration)
*Lopinavir has never been available for use, alone, without the addition of Norvir. As a result, it is not known how many pills of lopinavir and ritonavir would have been necessary if they were to be used together as individual drugs.
Most companies have studied whether or not their drugs can be used once a day, and it turns out that a number of them can, at least in people who are just starting HIV treatment (twice-daily dosing generally achieves higher blood levels of a drug, which may be necessary to treat drug-resistant HIV).
* These once-daily drugs are listed as preferred options for HIV-positive people starting treatment for the first time by the U.S. Department of Health and Human Services. Reyataz is preferred only when combined with low-dose Norvir.
If you are interested in starting or switching to a once-daily drug or a once-daily drug regimen, be sure to discuss the possibility with your health care provider.
How do I prepare for success?
If you're looking to improve your adherence—or preparing to start a new regimen—it's important to discuss the fears or challenges you might face with your health care provider. While talking with your health care provider may feel like the last thing you want to do, a good HIV specialist should respond with compassion and possible solutions. Adherence problems aren't something to be ashamed of; they're just one more piece of the puzzle that you and your health care provider are putting together to build the best treatment regimen for you.
There are also a number of simple tips and tools to help you better adhere to HIV treatment:
Tips:
This may sound silly, but you might try using jellybeans or M&Ms first! Think of it as an experiment to see if you can adhere to a treatment regimen. For instance, red jellybeans might represent Reyataz, blue jellybeans might represent Norvir, and yellow jellybeans might represent Truvada. Put 28 red jellybeans, 14 blue jellybeans, and 14 yellow jellybeans in separate jars. Like the real drug regimen, you'll take two red jellybeans, one blue jellybean, and one yellow jellybean once a day, every day. This will give you two weeks of practice, and if there are jellybeans left in the jars after 14 days, you may want to talk with your health care provider about the challenges you faced along the way.
Keeping your meds next to something you use regularly, on a daily basis, can help tremendously. Examples include your coffee pot, your alarm clock or your toothbrush.
Find out if your clinic, AIDS service organization (ASO) or pharmacy has a free program that will call to remind you to take your medications.
Pull out the instruction book for your cell phone. Many phones can be programmed to set off an alarm at various times of the day and night. People may be less likely to ask about your cell phone ringing than if you've set an alarm on a watch or other device.
If you travel frequently, always bring your meds in your carry-on luggage, and bring a few extra doses in case of flight delays and cancellations.
To make sure you're not dealing with any serious drug interactions, have your health care provider do a "brown-bag checkup." To do this, put all of the medications you take—including your prescription drugs, over-the-counter products and your nutritional/herbal supplements—into a paper bag and have your health care provider go through it.
Tools:
One-week, two-week and one-month pill boxes are available to help you lay out your meds in advance. Many people with HIV use these affordable and handy organizing devices.
Some pharmacies will sort out your daily dose of meds and organize and package them in blister packs rather than putting them into pill bottles.
Watches are available that can be set to sound an alarm at multiple points through the day.
If you regularly need to take your meds on the go, check out portable pocket-sized pill cases. Some have alarm clocks built in.
Are there any special challenges?
Ever since it became clear that HIV treatment success is highly dependent on adherence, scientists have been try to identify adherence challenges many HIV-positive people face. It turns out that adherence is a bit of an equal-opportunity issue, with struggles affecting people regardless of gender, race, economic status and many other characteristics.
There are three special situations that consistently have been found to affect adherence:
Mood Matters. A number of studies have found that people who are depressed have a harder time adhering to HIV drug regimens than people who are not depressed. Fortunately, there are many available treatments for depression, from medication to talk therapy involving one-on-one and group counseling. The symptoms of depression can vary a great deal and involve more than just feeling very sad. Some symptoms—such as body aches, sleep problems and bouts of irritation—may surprise you. See our lesson on depression, and if you suspect you are depressed, talk to your health care provider.
Cutting Chaos. The amount of chaos in your life, and the stress it places on you, can generate adherence problems. Chaos can include more than just an unpredictable and overwhelming schedule of activities. It can also include how safe and organized your home is, as well as money-management problems. Some ASOs have services and classes to help you lower stress and chaos in your life. Your case manager or health care provider may have other referrals.
Taking Care. Being the primary caregiver for children or other adults who are ill or disabled can place a huge strain on anyone. The needs and concerns of the people you're caring for can be overwhelming and become your primary focus. It's important to remember that your health must come first; you can't care for others if you become unwell. Some health insurance plans, ASOs and city and county governments have no- and low-cost assistance for people who are caregivers for others.
A final word
Learning everything you can about managing HIV and your medications will not only make adherence easier, it will help ensure treatment success on a number of levels. Here are some of the lessons that will give you the basic information you'll need to make effective treatment choices:
Meeting other people experiencing similar challenges can also be a big help. The POZ.com and AIDSmeds.com Forums can help you connect with other HIV-positive people who can offer wise words and support:
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