Staying on Schedule
"It was always that 4:00 p.m.dose!" Rob (a pseudonym) sounded angry and scared. "I was always up on a ladder with a paintbrush in my hand, or on a roof slapping down shingles. It was usually dinnertime when I thought of it again. I know you're not supposed to take Crixivan with food, but I took it anyway hoping that a little bit was better than none."
Rob's sharply rising viral load told him that a little bit was not better than none, and the fact that his virus was now unaffected by one or all of the drugs in his particular cocktail showed that a little bit was actually worse than none.
Rob's chances of finding another drug cocktail that would be successful in fighting his virus had been greatly reduced. He had known this from the beginning, as do most people taking anti-retrovirals. (If you feel you'd like to learn a little bit more about this, please call STEP for more information.) But knowing did not help him find a way to stick to his drug-taking schedule. In fact, fear-based messages don't work, according to Margaret Chesney, Ph.D., of the University of California in San Francisco.
Even transplant patients, whose very life depends on taking medication so they don't reject the transplanted organ, don't take their medications as they should. Even patients whose siblings have given up an organ for them don't take their medications as they should. This is a problem all throughout medicine.
People who have to take only one pill a day don't adhere to their schedule. Is it no wonder, then, that people who must take 20 or more pills a day on a very complicated schedule sometimes miss doses?
One study showed that more than 43 percent of participants missed a dose or took it incorrectly in the week prior to the survey. This was a self-reported survey and is almost surely underreported, meaning that even more doses were missed than the figures show.
People don't need to be told that they will die if they don't take their medications, said Dr. Chesney. They already know that. What they need are ways to help them stick to their schedule, day in and day out, no matter what.
Dr. Chesney practices what she preaches. She even had a magician teach her how to palm coins so that she could teach her patients how to palm medicines during a business meeting without being noticed by their colleagues.
The number one reason people forget doses of their medication is simple forgetfulness. Like Rob, they get involved in the living of their lives and just plain forget. How to remember? Here are some ways:
When you first think about going on three- or four-drug regimens, sit down with your provider and go through your lifestyle. Discuss openly what you think you can or cannot do. Some drugs must be taken with food, some without; some may cause side effects you find unacceptable. If you are not sure you can follow the strict requirements, try it out with jellybeans or mints for a week. If the regimen you end up with does not fit into your daily schedule, you are setting yourself up for failure. It must feel right to you.
Make sure you truly understand what pills you are supposed to take, and how and when to take them, before you leave your health care provider's office. Dr. Chesney goes one step further, saying each person should have a picture of their regimen to take home with them. Several drug companies make stickers of the various anti-HIV medications that can be stuck to an index card. This serves as a visual reminder of what to take when, and how many. Women need be especially assertive on this point. A survey of women in drug studies with the AIDS Clinical Trials Units demonstrated that more than 50 percent of the women did not know how to take their medications properly, even though they had been given this information. (Whether this is due to the distractions of having children with them or some other factor is not known). This figure is probably higher for women who attend clinics and offices not dedicated primarily to HIV care.
Tie your medication schedule to the routine of your day. Identify activities that fit your medication intervals that can act as reminders. Morning rituals (showering, shaving, brushing your teeth), TV shows, and walking the dog are examples. Do you watch Oprah at 4:00? Take your meds before you sit down to the TV. Do you always have yogurt for breakfast? Place your morning dose on top of the yogurt container before you go to bed. One woman always walks her young daughter home from school at 3:30 in the afternoon. She takes her pills before she heads out the door.
Use a timer. Although timing cues are less effective than activity cues, if you do not have a daily routine, you can tie your medication to the clock. There are a variety of timers, watches with alarms, and beepers to help you remember. There are even computerized caps for your medication bottles that will beep reminders at the correct times. This is called a Medicine Event Memory System (MEMS) cap or Smartcaptm. Although this will not work for everyone, if you think it will be helpful for you, discuss it with your pharmacist or call Swedish Medical Center's HIV Research Department at 206-286-2523.
Make a weekend plan. Weekends are hard because the routine usually differs from the daily routine. This might require you to make different reminder arrangements. Brainstorm solutions before the weekend arrives.
Plan ahead for interruptions to your routine. If, for instance, you are traveling to Mexico for your winter vacation, work out in advance ways to ensure you have enough medicine and that you can take it properly. This includes carrying pills for all needed doses during the flight. Having them in your carry-on luggage may not be good enough, because airlines sometimes require, with little or no notice, that these bags be put into the cargo hold.
Learn as much as you can about your medications, ask questions, and don't be afraid to tell your provider that your regimen is not working in your life. Taking medications properly requires the combined efforts of the health care provider, the pharmacist, the pharmaceutical companies-and you.
Although taking anti-HIV medications properly and on time is of enormous importance to thousands of people, little or no research is currently being done on how to accomplish this. Dr. Chesney knows of no studies going on right now. Talk to your health care provider about any upcoming studies in which you might be able to enroll or call 1-800-TrialsA to hear of any future studies.
This article was provided by Seattle Treatment Education Project. It is a part of the publication STEP Perspective.