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Medications We Hate to Take

Winter 2000

Several studies on chronic illness have shown that adherence improves as medication regimens are simplified. We are striving to simplify HIV treatment regimens, yet, this goal has not been achieved. Ideally, simplification would include: reducing the number of times each day that medicine must be taken, reducing the number of pills that must be taken and minimizing the side effects. For example: Once or twice a day regimens improve adherence by 80 to 90 percent. Medications that must be taken three times a day have an adherence average of about 60 to 65 percent.

Lack of adherence (not taking your prescribed medicines or missing doses) is a common problem among all patients. It's even harder when the therapy is complex and chronic (for a long time).

Many factors impact adherence to treatment, including the amount of pills that must be taken, the severity of the side effects, (do they make you feel sick) and how much the medication regimens are simplified.

Treatment for HIV disease is crucial; adherence presents a significant challenge to both the patient and health care providers. Although aggressive combinations of antivirals have enormous potential to delay disease progression and death, strict adherence to very complex medical regimens is required of women who's lives are already complicated enough. Achieving complete viral suppression can be extremely difficult for clinicians and patients. It involves seriously addressing adherence issues.

Recent surveys reveal that one third of HIV positive patients self-reported missing doses of their medications within a three day period. The association between poor adherence and virologic failure (increases in viral replication, aka "viral load") due to resistance has been clearly established.

Optimal management of the HIV+ patient is dependent not only upon the clinician who evaluates and treats each patient, but on patients who must follow through and adhere to treatment recommendations in order to stay healthy. One study showed that most chronically ill patients failed to recall important medical advice and did not always adhere to advice that was remembered. The frequency of patients adhering to clinicians' recommendations ranged from 20 to 70 percent.

Patient involvement in decisions regarding medication is critical. Selecting a drug regimen ("cocktail") that provides viral suppression, can be taken the least amount of times per day, and minimizing the pill burden (the number of pills per day) will increase the likelihood of patient adherence. (Note to positive readers: It is not recommended that you do this on your own. Please discuss strategies for adherence with your health care providers.)

Adherence improves when patients trust the health care team who provides their HIV care. When patients feel they can talk openly about problems with taking medications without being judged or criticized, issues of nonadherence can be addressed.

Many studies looking at why patients have a difficult time with taking medications have been analyzed. It is clear that gender, age, race, socioeconomic status, educational level, and a history of past substance abuse are not predictors of poor adherence to treatment, (although active drug or alcohol use can interfere). However, for some patients, complicated drug regimens are all that's left. Assessing ways to improve compliance becomes essential in order to achieve a longer and healthier life with full viral suppression.

Patient involvement in decisions regarding medication is critical.

The best opportunity for maximal viral suppression and to achieve durability is with the first drug regimen, before the virus has had a chance to develop any resistance. Close monitoring and support are essential for patients to continue to take drug therapies. Clinicians have an obligation to find out important lifestyle questions about their HIV+ patients before starting antiretroviral medications. For example, how often does the patient eat, how much fluid do they drink a day, would they prefer to take their medications with food or on a empty stomach. Answers to these questions may help to provide a guideline to assist in a selection of drugs for a combination of medications that would be the best choice to enhance adherence.

Demanding perfection in adherence may not be the best approach. Encouraging the patient to make the best possible effort not to miss a dose might be a better alternative. It is extremely important for clinicians to make every attempt to find activities within their patients' lifestyle that may help to trigger taking medications. For example, it may be easier for some patients to remember to take medications with breakfast and dinner. Another strategy may be to set pills out, ie near your toothbrush. When you brush your teeth in the morning and at night it can be the reminder needed to stimulate taking medications. Tailoring a drug regimen that fits the patients' life style will help to increase adherence.

Starting antiretroviral therapy should be a decision made in partnership between the patient and the health care provider. It's important to establish reasonable goals and expectations which are clearly understood during the initial visit and then reinforced with each subsequent visit. Starting on antiretrovirals is generally not an emergency. There is time to consider all the elements and make the best choice possible. The clinician prescribing medications, as well as the patient who is considering taking medications, need to take their time in researching the best combination.

Patients Obligation

Patients also have an obligation to ask questions about the medication, the potential side effects and whether they feel that the medication regimen selected by their health care provider will fit into their lifestyle. Becoming involved and knowledgeable about the disease process, the current treatments that are available, treatments that are still in clinical trials and whether they look promising or not, are important issues to look at before and during therapy, as well as when medications need to be changed.

One of the most important messages that can be discussed with patients infected with HIV who are currently taking antiretroviral medications is the importance of not dose-reducing their medications. The first four weeks can be the most difficult in becoming used to a new medical regimen. This can be the time when side effects can be the worst. This could also be the time when people may be most tempted to lower their own dose. It's very dangerous to decide on your own what your dose of any particular medicine should be. Even though you may think that your dose is too high or that you cannot tolerate it, you can't, for example, just take half a dose. The dose being prescribed to you is the most effective against the virus. Any variation may cause resistance and viral mutations. Generally, side effects become less severe over time. It's important for patients to know that although they experience undesirable side effects, most will eventually go away. (report all side effects to your doctor, immediately)

Other tools that may be considered to improve medication adherence are to use pill boxes, pill counters, beepers, adherence questionnaires and treatment advocates.


Treatment advocates are generally peers (meaning someone who is HIV positive and is either taking medications and/or is or will be faced with decisions about taking medications). They have been trained and are supervised by medical personnel. They can help to advocate for patients who cannot or do not want to ask questions of their medical team. Treatment advocates can help both the patient and the medical team to mediate conflicts, educate consumers to understand the virus and how it works, or just reinforce the importance of taking medications on time. Treatment advocates can be an invaluable member of the health care team along with the patient and their clinicians, nurses and educators.

Lastly, it is extremely important that patients try to learn the names of the medications that they are currently taking or have taken in the past. Keep a list. For example in the back of the Women Alive Treatment Guide, Knowledge Action Health, there are a couple of blank pages just for this purpose.

Knowing the names of your medications can be essential in making sure that the right medications have been given to you by the pharmacy. If you do not recognize the name on the bottle of medication or the name is different, you need to report this immediately to your clinician. If the names of the medications are difficult to pronounce, then have your clinician or treatment advocate write them down on a piece of paper. This way you can compare the name on the bottle and the name on your list each time your medications are picked up. You could also write down the medications that you are allergic to. Also, it's a really good idea to carry your list (or treatment guide) in a purse or wallet in case of an unexpected visit to the emergency room. This will help the physician to have access to the patients allergies as well as their current medications.


Medication adherence is an important component of successful treatment. The standard of care for HIV disease is now a multidrug regimen. The complex issue of adherence has moved to front and center. Health care professionals including: physicians, physician assistants, nurse practitioners, nurses, treatment advocates, and educators can work together as partners in HIV health care along with the patient to achieve adherence, prevent the development of resistance, and obtain optimal benefits from new treatment regimens. The desired outcome is to slow down the progression of HIV disease and improve quality of life for women with HIV/AIDS.

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This article was provided by Women Alive. It is a part of the publication Women Alive Newsletter.