ASH 2013: Jan Geissler & Giora Sharf Part 2 on Adherence, the High Cost of Cancer Medications, and the Importance of Clear Communication

In the second part of my interviews from ASH 2013 with two smart patient advocates in the CML world, Jan Geissler and Giora Sharf reveal 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 years a strong participating network of patients ready to jump in and help.

As someone in the throes of establishing a new CLL-focused non-profit organization, let me assure you, none of this comes easily. It was earned with hard work and trust.

More news soon on how this nascent disease specific non-profit will benefit anyone touched by CLL in very focused, local, unique and practical ways while not recapitulating what is already being done so well by the LLS and LRF, two great organizations that supply excellent background disease information and much more and also provide high quality large group meetings with top flight reviews of the basics in CLL in their breakout sessions. Here is my report from the last LRF meeting. I was also privileged to be asked to volunteer to speak on self advocacy this past weekend at the LLS Blood Cancer Conference in Los Angeles. I plan to share those slides I developed here and on the LLS web site soon.

Our new non-profit will be working with smaller interactive groups and be strongly focused on the cutting edge of research. More to come. I am so excited. This will make a high difference.

But I digress.

If you haven't seen the first part of the interview or you just want to revisit it, please click here.

If you want to read their fine paper, please click here.

The first few minutes of this section of the ASH 2013 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, browse through my blog and 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 program 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.

More soon from ASH, more on adherence, and more about the new non-profit to help those of us with CLL with better support and communication.

ASH 2013: Giora Sharf and Jan Geissler Discuss Mediation Adherence or “Drugs don’t work in patients who don’t take them.” – C. Everett Koop

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.

Targeted therapy.

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.