I am introducing a new subject, namely the importance of taking our medications as prescribed.
What we call this simple behavior has been undergoing some changes as we have shifted from the more paternal old school term of "compliance" to the newer shared decision making model inherent in the recently most popular term "adherence".
I wrote an entire article
on this important semantic issue a few years ago and will be updating it here as there has been further evolution in this topic of what these world imply about our world view.
I plan to spend some time on this subject over the next few months because it becoming increasingly important to all of us with CLL, in fact to any of us with any chronic disease.
This is especially true in the cancer world and there is much we can learn from the poster child of game changing targeted therapy where you simply swallow with a glass of water, imatinib or Gleevec
, and poof….your cancer is no longer an issue.
It is hard to exaggerate the importance of the development of imatinib. For CML (chronic myelogenous leukemia) patients it changed a former life ending cancer (unless you had a successful but very risky bone marrow transplant) to a chronic disease controlled with taking a pill. The development strategy involved also fundamentally changed forever how all cancer could ideally be controlled.
Ibrutinib and idelalisib and all the new oral meds or TKIs are products of the process that was first so successfully deployed with Gleevec. First understand the biology of the cancer, figure out what is uniquely driving the malignant cells and then block it and try to block little or nothing else.
The Pulitzer Prize winning book, The Emperor of All Maladies
by Siddhartha Mukherjee is must reading for anyone dealing with cancer, and much of it is about the history of imatinib.
But even a wonder drug doesn't work if we don't take it.
30% of CML patients are not taking their life saving medications, and that is the leading cause of developing resistance to therapy.
So please listen to what my friends from the CML world have to say about adherence from ASH 2013.
Giora Sharf and Jan Geissler are not physicians but CML patients turned advocates and researchers who presented important research at ASH about why people don't take the pills that are saving their lives.
Here is part 1.
More on this and other news from ASH soon.
Labels: Adherence, ASH 2013, Chronic lymphocytic leukemia, CLL, CML, Geissler, Giora Sharf, ibrutinib, Idelalisib, imatinib, informed patients, interviews, patient advocates, Video