Special Edition of Medicine Chest:Adherence 101
Pushing people to adhere to complicated drug regimens may seem to some like intimidation of innocent victims just to maintain high profit margins for multinational pharmaceutical companies. Or, could it be that high levels of adherence may help the medications work effectively and keep people healthier and living longer. In order to get the most benefit out of each drug regimen, people taking the drugs must answer these questions for themselves: Are these medications going to help me? How will these drugs affect my quality of life? Many research dollars have been spent to try to balance drug benefits and quality of life. Understanding drugs and how they work will result in longer durability (how long the drugs will keep viral loads undetectable) for each regimen. If we can string together many regimen combinations to keep the virus from replicating and causing damage, there will surely be better drugs and options for us down the road.
Of course, this will all come at a price. Drugs available today to treat HIV infection have many side effects and problems associated with them. Many of the problems we see today are not understood and continue to be a concern for doctors and patients alike. Not too many years ago, we didn't see a lot of these problems simply because people did not live long enough for the situation to manifest itself. With increased durability of drug regimens, and possible sequencing of interruptions in therapy, everyone's goal is to keep people healthy for longer periods of time. [See: "To Start or Not to Start?"]
It is important that we all understand how adherence plays a role in keeping viral loads undetectable. It has been shown in many reports that at least 90-95% of all doses must be taken properly to get the maximum benefit from the drugs. Less than perfect adherence teaches the HIV virus to get past the drugs (resistance). For those that take medicine twice a day, that means that missing one dose a week can put you near the edge. The effect of poor adherence does not always show up right away. You may even get a great viral load test result after poor adherence. Less than perfect adherence will show its nasty head in the durability of the regimen. Your health care provider may have to switch out your drugs sooner than you would like.
In a European study, after two years on therapy, 60% of the people enrolled in the study were undetectable on their first regimen, only 50% got to undetectable on their second regimen and only one out of three could get to undetectable on their third regimen. What this means to you is that the fewer drug changes a provider has to make, the better your chances are getting to undetectable. As we switch around drug regimens, the schedules often become more complicated and the number of tablets usually increases making life with HIV more complicated.
Help your health care provider pick a drug regimen that works best with your lifestyle and schedule. Everybody wants a "one-pill-a-day" regimen, but we are not there just yet. There are some changes that can be made in number of pills and doses per day. Communicate with your doctor about any concerns you may have before even starting therapy or switching to new drugs. There are only so many drug combinations available, you don't want to waste any options if you don't have to. When an HIV-positive person begins their first drug regimen, this is usually the most potent regimen, often with easier dosing schedules.
We must be clear on what adherence is and what it is not. Adherence is the ability to take each dose of medication at the prescribed time, with or without food when indicated, and without other drugs interacting with the ones used to treat HIV. Adherence is not being a couple hours late taking a dose, or forgetting to eat when the prescription says to take with food, and "empty stomach" usually means to take the drug one hour before a meal, or two hours after. Food can either reduce the level of drug in the body (like with Videx), or in another case, taking a drug without food can also lower drug levels (as with Fortovase). If the drugs you take don't get into the blood, it is almost like not taking the drugs at all. Here are some more tips that may help:
Your beliefs may help you or hurt you. Do you know how the medications work? Do you believe in Western medicine? Are you an optimistic person? Do you suffer from depression or fatigue? Is the medicine keeping the disease at bay, or are all of those pills just reminders of HIV and therefore bringing down your spirits? Before initiating anti-HIV therapy or switching regimens do a check of your beliefs.
Try to prevent or predict side effects. Your ability to control unwanted side effects will probably result in better adherence. Be prepared to treat diarrhea or nausea with over the counter medication (check with your doctor or pharmacist). Visit jonkaiser.com, larklands.net, daair.org or medibolics.com Web sites for ideas. Call Project Inform's HIV Health InfoLine toll free at 1-866-448-4636. Ask for a copy of Dealing with Drug Side Effects, or visit www.projectinform.org.
How about getting a "buddy" to help keep you on schedule. Involve a partner, friend or family member to help you. In Chicago, call TPAN at 1-773-404-8726 or call the U.S. Centers for Disease Control and Prevention (CDC) national 24-hour hotline (1-800-CDC-INFO) for referrals to services near you. Make sure that the buddy knows their stuff! You'll want to get accurate information.
Refill prescriptions before they run out. Sometimes pharmacists have to contact your physician to get prescription refills. This can take a few days in some cases. Plan ahead. For long days at the office, carry your evening dose of meds with you, in case you don't make it home on time. If you are going to be out of town, be sure to have enough medication for your trip. Pack medications in carry-on bags so they don't get lost.
Use cues as a reminder to take your pills -- after a favorite TV show, or after brushing your teeth. Beepers, alarm clocks, and reminder services call all help keep you on schedule. The easiest tool to use is a seven-day pillbox. Line up all your pills for a whole week. Each day's dose of meds is labeled for you. If you are not sure if you took your Wednesday morning dose, look in the pillbox. If they are still in there, you didn't take them!
Do not stop taking your anti-HIV medication, even for a day, without first talking with your health care provider.