“This drug will save your life, but you have to take it every day.”
I’m pretty sure it was said insensitively.
As these words were said, I was thinking about a young woman with CML (chronic myelogenous leukemia) who tragically had not taken her imatinib (Gleevec) every day as prescribed, and when her disease progressed, she was not able to establish another remission. I was upset with the physician who might not have delved deeper into her level of understanding, what the medication meant to her, and why she may have unintentionally elected to not take it or to not understand the instructions completely.
Behavior is complex. I learned this early on. My father is a psychiatrist.
I will never forget the time my sister and I missed our plane prior to what was going to be a long absence from our father. Having made the plane on time (prior to TSA security), we sat with our dad in the terminal directly in front of the plane as it took off. Knowing and not knowing (disavowing) that the plane was right in front us, we missed the plane because our loving father did not want to let us go. He gave the "interpretation" that I only understood much later. Fortunately, he was able to locate another flight so that we could go on our trip.
The will and the wish to live are strong. It may in fact be so strong that anything that threatens that wish is disavowed and one misses the plane.
The patient with CML was having a personal experience at that moment. She did not have the advantage of an objective experience after having seen other patients and the consequences of their behavior.
When bad things happen, we like to blame other people. It’s human nature and it helps us get by, and get on with life.
Infusional drug therapies require people to come into the clinic and be seen by a nurse or doctor. As long as they show up, the onus is not placed on the patient to take the drug, like with oral chemotherapy or biological agents that are given at home. If a patient doesn’t come in for the infusion, it’s easy for an oncologist or nurse to intervene.
In general, people are no more than 70% adherent to any one medication. I imagine that there are actually hundreds of reasons to not take a medication--even knowing that it is the one thing that you have to do to save your life. This presents a problem for patients with CML for example, where one generally needs to be at least 80% adherent to imatinib to obtain a molecular remission (the most stringent marker remission). Yet, we know that people stop the drug due to fatigue, not understanding why they need the medication, or for many other potential reasons. This will continue to be an issue as most new targeted anti-cancer agents are taken by mouth. We need to understand the issues for when medications are self-delivered in the home.
When we look at the difference in survival that is obtained with adherence or lost with health disparities, it is equivalent to a very powerful medication that would have required a billion dollars to develop (i.e., the average cost to take a drug from bench-to-bedside is approximately $1.5 billion dollars). Yet, very few studies actually evaluate adherence, and we do not have many options for managing this issue.
Drugs are not effective if they are not taken. Their effectiveness begins with how people are able to incorporate the new medication into their lives:
How well these questions are delivered and assessed for understanding is not standardized.
With available therapies and the desire for treatment, no one should succumb to a treatable disease due to a poor understanding of its purpose, misunderstanding, or fear of the medication. We need to figure out better ways to help patients navigate the complex medical system. Patient knowledge, advocacy, communication, and support save lives.