In the second part of my interview from ASH 2013, I discuss adherence, cost and the importance of clear communication with two smart patient advocates in the CML world, Jan Geissler and Giora Sharf. They share the results of their important study done in conjunction with their non-profit umbrella organization, The CML Advocates Network.
Before I get too far into my analysis of the results, let me first applaud Giora and Jan for doing all the hard work in making this possible.
Not only did they recognize an unmet need, they realized that their opinions would only be respected with valid research backing them up.
Then they had to not only design, develop, and ultimately score, review, interpret, write-up and present the data, they first had to procure the funding, find the doctors willing to help, and have developed over the years a strong participating network of patients ready to jump in and help. None of this comes easily. It was earned with hard work and trust.
The first few minutes of this interview identifies some of the high risk markers for skipping our medications.
Later we discuss the issue of the high cost of the medication. Not surprising, this is a well-recognized risk. Should I eat or take my pills? For more on this important issue, take a look at this paper on cost of oral medications and adherence in CML.
Many pharmaceutical companies (see the You & I Access program as an example for ibrutinib) have generous programs to help defer the cost. The LLS can be a big help, but properly constructed, well-conceived, and revenue neutral oral parity laws (where the percentage of the cost borne by the patient for oral drugs and IV drugs is similar) are not only possible but are desperately needed to avoid all these welcomed but ultimately stopgap measures.
Finally, as Jan says: “Adherence is partnership.” The patients, the doctors, and the patient groups getting the word out about the importance of clear communication and understandings.
Ultimately good communication is the most critical and fortunately the most malleable piece of the puzzle.
Here is the video:
Please pardon the abrupt finish. You didn’t miss anything but a technical glitch.
Dr. Brian Koffman 2/17/2014