The following article is compiled from Body Positive and the Nevada AIDS HotLine, Marcelo Marer and Rick Sowadsky
One of the issues concerning taking or prescribing combination therapies for HIV disease is adherence (a.k.a. compliance). Adherence is a sensitive issue because there is a potential for many PWA's to be labeled as "non-compliant." If that happens it could lead to some people being denied medications and/or DOT (Direct Observation Therapy.)
Adherence is defined as: "...the extent to which a patient's health-related behaviors correspond with medical advice."
Medications used in today's combination therapies need to be maintained at blood levels high enough to be effective. So far, scientists have only completed research on the effectiveness of current prescribed dosages.
People with HIV sometimes experience severe side effects from antiviral medications (also known as "drug cocktails"). Some have wondered if the benefits of these drugs are worth the side effects. In many (but not all) people, these drug cocktails have been shown to be very helpful in improving their health. But are these benefits worth the nausea, vomiting, fatigue, and other side effects that sometimes occur? People suffering from severe side effects must make a very personal decision by asking themselves, "which is more important, quantity of life, or quality of life?" This balance between quantity and quality of life is a very personal decision.
Successful adherence to complicated medical regimens takes a cooperative effort between PWA's and health care providers. Still, few patients or health care providers think about strategies for successful adherence. We tend to think of adherence as a kind of personality trait: some people are good at it; some are not. (Again, we have to be careful that people who are not so good at adherence, are not branded and denied medications in the future. The danger of class divisions of "good PWA's" vs. "bad PWA's" is a reality to consider.) There are things patients and health care providers can do to enhance adherence to HIV medications.
Keep in mind, this is not a doctor vs. patient issue. It is about patients and health care providers coming up with the best strategies for adherence in order to improve success rates.
People who decide to start combination therapies want them to work. Since adherence is key, once people know how necessary it is, they will want to adhere to their agreed-upon prescribed medications. However, the situation may change after one actually starts taking the medications. The treatment of HIV disease is a long-term venture with strict guidelines. It is not clear for how long full adherence to a complex regimen will be necessary.
One of the biggest obstacles to adherence is that when one feels well, she or he may stop taking their medications. With asymptomatic HIV disease, there are no "symptoms," so it is hard to gauge one's wellness; therefore much is left to viral load and T-cells.
The symptomatic person might need medicine right away and cannot wait for the optimal moment to start his or her combination. Even if symptoms go away, it is recommended that the medications not be stopped.
Patients and doctors need to be ready. The patient needs to be ready to make room for HIV medications in her life. The doctor needs to make room for a patient who might need extra attention for a couple of months. Getting off to a good start, increases your chances for long-term success. Be clear about the possibility of needing to change to a different treatment and schedule if the current one is unsuccessful.
HIV therapies have side effects that are hard to manage. Initial side effects often subside. There are some side effects that worsen with time, depending on what medications one is taking.
Another problem may be forgetfulness. Combination therapies include many medications with different food restrictions and requirements that might not be easy to coordinate. You can try many different approaches, such as pill boxes, pill boxes with alarms, beepers, etc. Again, brain-storming about what is most effective for you is necessary. This can be done with your health care providers, friends, support groups, etc. Don't forget to talk about "forgetfulness" before you start treatment.
Skipping dosages is even worse for those who are taking protease inhibitors. Medication holidays might become medication nightmares if resistance or cross-resistance ensues.
The First Months
The first couple of months are critical. Side effects are most difficult to deal with, either because our bodies are adjusting to the new medications or because we are adjusting emotionally to starting meds and the resulting side-effects. This period could entail follow-up visits with providers to see how you are doing on new therapies.
Some people who suffer from severe side effects stop taking their drugs or skip a dose or two, or just stop taking their drugs altogether. This is commonly known as taking a "drug holiday." Depending on the circumstances, this could be very harmful.
When one goes off medications, the viral load can increase substantially, since there is no longer anything to limit reproduction of the virus. The higher the viral load, the greater the damage to the immune system.
There may also be problems if one stops taking just one or two drugs of a cocktail, rather than stopping the entire cocktail. It is recommended that all the drugs in that cocktail be stopped, then started all at once when a decision is made to go back on meds.
It is also important that you have someone you know you can count on if you have a bad day. If you don't have a network of support, you can always join drop-in support groups at any AIDS organizations near you. If you are not feeling well enough to go to a support group or don't have an AIDS agency close by, you can call the local help lines or national hot lines such as:
Ideally, try to set up a network of support for the difficult days before you start your combination therapy.
Generally speaking, once someone starts treatment, it is strongly recommended that they continue treatment indefinitely (although they may he able to switch from one drug cocktail to another). If side effects are so severe that quality of life is significantly reduced there are options:
Discuss concerns with your doctor BEFORE making any changes in treatment. Take some time to talk to a Treatment Advocate if one is available at your local agency. The Treatment Advocates can help you sort through all of the complicated information. Living with HIV is a balancing act between quantity of life, and quality of life. Only the person living with HIV can decide where the balance lies.
Bear in mind that some "recreational drugs" are known to cause adverse interactions with protease inhibitors. You have the right to start taking your medications when you decide do go on them. Combination therapies can be an incredible health booster, but you and your health care providers need to make this deal work. The quality of your life is at stake.
Although your doctor might not be able to tell whether or not you will adhere to your HIV medications, you might be able to figure out some of your weaknesses and strengths and work on them.
When You Decide
Once you and your health care providers decide which combination therapy is the most appropriate for you, you might want to rehearse with Tic-Tacs. Take the Tic-Tacs for a week as if it were your real medication and see how that goes. Can you incorporate the Tic-Tacs (medications) into you daily life? How do they go with your eating and sleeping habits?
Finally, research has also shown that there is no one single approach to good adherence. A combination of approaches work better than simply one. It takes both patients and health care providers to do the job right.
Questions to Consider
Remember that treatment guidelines are changing very rapidly. Therefore, some information may have already changed by the time it is published. Also, to change treatment (and what treatments to change to), vary from one HIV expert to another. Simply put, treatment is a topic where one question can have many different answers (and opinions), depending upon whom you ask, so always consult with your doctor.
These same issues of quantity of life, versus quality of life, can be found with any other chronic and life threatening disease. People with cancer must ask themselves these same questions, especially as they relate to the side effects of chemotherapy, radiation therapy, surgery, etc. So the options discussed above apply not only to those being treated for HIV, but for other life-threatening illnesses as well.
The following is an excerpt from the CDC's AIDS Daily Summary: This is an example of how dangerous the issue of adherence can be. The "variety of medical pagers and alarms" referred to in the article, can indeed be helpful. The idea of a medical bottle cap with an alarm equipped with a logging device when the cap is opened and closed, might also be helpful to some people. The scary part is the overall condescending and somewhat punitive tone of the piece.
There's a tracking device that "can help doctors determine if their patients are taking the medication"? I can tell my doctor if I 'm taking the medications, if I am having trouble missing doses or if I'm not taking the medicines and if I want to take them or if I don't. The device should be there to help me!
Studies have shown that misuse of prescription medications can be just as dangerous as the illnesses the drugs are supposed to treat. Adherence problems are becoming an issue as drug-resistance increases, particularly with patients who are infected with HIV or tuberculosis. In order to combat noncompliance, methods have been devised to help assure that patients remember to take their medicine. The AIDS clinic at Yale-New Haven Hospital, for example, supplies all patients with a segmented pillbox that can hold one-week's worth of medicine. Dr. Gerald Friedland, director of the AIDS program at Yale, explains: "What's special about HIV infection is the sheer complexity of the medications. One of the definite predictors of poor adherence to treatment is the complexity of the regimen." A variety of medical pagers and alarms have been designed to help patients maintain rigorous regimen schedules. One device, a medical bottle cap with an alarm, can help doctors determine if their patients are taking the medication, because the device logs when the cap is open and closed.
And they want our names?! The next thing you know, they will create a device that tells the Health Department whether or not we have missed a dose of medications. Maybe they will send us to the "AIDS colony" in Thailand, i.e.
Thailand plans to construct the world's first AIDS Colony for 10,000 PWA's to "help contain the disease."
CDC Daily News Update should be cited as the source of the information. Copyright 1998, Information Inc., Bethesda, MD.
This article was provided by Women Alive. It is a part of the publication Women Alive Newsletter.