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Adherence

Last update: November 2009

Strong Drugs to Fight HIV

The many advances in HIV treatment in the past 20 years have led to the approval of 25 drugs that fight HIV, as well as five combination pills that contain two or more HIV drugs. This is a remarkable accomplishment. Most importantly, using these drugs in effective combinations is helping many people control their HIV and live longer and healthier lives.

 

In order for the drugs to do their job properly, you need to do yours! Your job is to take your drugs exactly as they are prescribed. This is called adherence. It means taking the correct doses of your medications every time you are supposed to take them.

 

Despite the many advances in HIV drug treatment (such as fewer side effects, less restrictions, and easier dosing), taking HIV drugs is still daily, lifelong treatment. This can make adherence challenging for many people, but the benefits are well worth the effort.


The Importance of Adherence

When you take a drug, it gets processed by your body and enters into your blood stream. The HIV drugs need to stay in your blood at certain levels to fight HIV. If the level falls too low, the drugs cannot work well.

 

When you take your pills on schedule, you keep the right level of the drug in your body. By not taking your medicines on schedule, you risk letting drug levels drop. This may allow HIV to make copies of itself and even make changes (mutations). These mutations can help the virus survive, even when you do take your HIV medication. This is called resistance.

 

When HIV becomes resistant to a drug you are taking, that drug will probably stop working. This may lead to an increase in your viral load and a decrease in your CD4 cell count. At that point, you will probably have to switch to another HIV drug.

 

Resistance to one drug can sometimes cause resistance to other drugs you have not taken. (This is called cross-resistance.) Resistance can affect your treatment choices in the future because fewer drugs will work well against your virus.

 

The best way to prevent resistance is to stick closely to your medication schedule. Some studies suggest that 95 percent adherence may be needed to get the most benefit from HIV treatment. That means missing very few doses.


Starting and Choosing HIV Drugs

There are a number of things to think about when deciding whether to start HIV drug treatment. Two of those things are your CD4 count and viral load.

 

You should also think about whether you feel able to commit to taking your drugs correctly. If you don’t feel ready, discuss the reasons with someone who knows about HIV. Your health care provider or the staff at an AIDS service organization (ASO) can give you accurate information to answer your questions and address your concerns.

 

If and when you decide to start, you and your health care provider will review your treatment options. There are many HIV drugs to choose from. The goal is to pick a regimen that can fit into your lifestyle. You will need to consider the following about the drugs:

  • How many times a day must they be taken?
  • How often should they be taken (every 12 hours, every 24 hours)?
  • How many pills per dose are needed?
  • Does it matter if they are taken with food or on empty stomach?
  • Are they taken by mouth or injection?
  • What are the side effects?
  • Are there other drugs they cannot be taken with?
  • Do they require refrigeration or other special handling?
  • Do you have medical conditions (including planning on or being pregnant) that make certain drugs unsuitable for you?

Once you choose your regimen, it is important to make sure you really understand how to take each drug. This will help you be adherent.

 

It is a good idea to write down the answers to the question listed above for each drug in your regimen. Then come up with a schedule for taking the drugs with times, number of pills, and any food requirements. Go over this with your health care provider to make sure everything is right. You can check again with your pharmacist when you fill your prescription.

 

Not all drugs have food requirements, but the ones that do work best if they are taken with or without certain foods. Ask you health care provider and pharmacist about each of the drugs you take. If one or more of your drugs needs to be taken with food, find out if that means a full meal or if a snack will do. Some drugs can be taken with food, but not high-fat foods. Plan ahead so that the times you take drugs with food requirements fit in with your eating habits.

 

It is also important to find out what to do if you miss a dose. This happens to everyone from time to time. When it does, follow your health care provider’s instructions and then get right back on track with better adherence.


Barriers to Adherence for Women

Many women find it difficult to be adherent to their HIV medication for the following reasons:

  • A busy lifestyle
  • Not having disclosed their HIV status to work colleagues, friends, lovers, or family
  • Depression, a leading cause of non-adherence, is more common in HIV+ women than HIV+ men
  • Other life stresses, such as childcare or parenting issues
  • Current or past problems with side effects
  • Active substance use or alcoholism
  • In America, women are less likely to have health insurance than men. Without health insurance, women are unlikely to be able to access adequate care and treatment
  • Many HIV+ women do not have secure or permanent housing; this presents additional barriers to accessing treatment

Overcoming Barriers

Despite the complexity of women’s lives, numerous studies have found that women are just as likely to adhere to HIV regimens as men, especially when the women have a longstanding and trusting relationship with their health care providers.

 

Even though it may be embarrassing, it's important to tell your health care provider about the number of times you have missed a dose or did not take it correctly. He or she may suggest a change in your dosing schedule or drug regimen that makes it easier. Newer HIV drugs require fewer pills per day and have fewer food restrictions. There are also new ways to combine older drugs that make them easier to take.

 

Side effects are an important factor in determining whether women continue on their HIV drugs. While all of the HIV drugs can cause side effects, not everyone will experience them. It is a good idea to find out what side effects to expect before you start your drugs. Then ask your health care provider how to manage minor side effects if they arise. Being mentally prepared can make side effects easier to manage if they occur.

If you do experience a side effect, don’t just stop taking your pills. Follow the recommendations given by your health care provider. If the problem persists, speak to your health care provider about other solutions, including switching drugs.


Adherence Tips
  • Believe that the medications will help you fight the virus and stay well. If you don't think so, you won't bother taking your pills right. If you have any doubts, speak to your health care provider or staff at an AIDS service organization (ASO).
  • Use a daily activity, one that you do every day without fail (like waking up in the morning or going to bed at night), to remind you to take your pills. When it’s time to do that activity, you will know that it’s also time to take your pills.
  • If you don’t want others to see you taking your pills, quietly slip away to a secluded area or the bathroom. If that won’t work, say the medications are for another health problem or that they are vitamins.
  • If you suspect substance use or mental health issues are preventing you from taking your medications correctly, talk to your health care provider or case manager so they can get you help. There are good treatments available.
  • Take advantage of tools available from your clinic or pharmacy such as pillboxes, calendars, diaries, and beepers to help you remember to take your medications
  • Plan ahead for refills or trips so you don't run out of any medications.

Finding Support

Adherence is hard work and takes a lot of commitment. It helps to have other people on your side. One way to do this is to put together a support network. Your health care provider is one of the most important people in your network. Talk openly with him or her about how to fit HIV treatment into your lifestyle.

 

There are many other sources of information and support available to women who are taking or thinking about taking HIV treatments. If you can, include family, friends, case managers, treatment educators, and counselors in your network. You can also get involved with your local ASO or a support group . These are places where you will be able to ask questions and share experiences. When you are feeling discouraged, turn to your network for support and encouragement.

Also, remember the big picture. It is hard to take pills every day, but remember why you are doing it. You want to be adherent to give your treatment regimen the best chance of working to keep you healthy. This will allow you to focus on the things you care about – including the important people in your life like your children, partners, family, and friends.

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A Girl Like Me
This online blog is a program of The Well Project and a place for HIV+ women to share stories and experiences. Read the stories of HIV+ women ranging from 25 to 59 years old...from Southern California to South Africa...discussing their strengths, their fears, their differences and their similarities.



Information provided on this website is for educational purposes only. It is designed to support, not replace, personal medical care and should never be used as a substitute for personal medical attention, diagnosis, or hands-on treatment. We recommend all medical decisions be made in consultation with your personal health care provider.