Hearing the Patient Voice

December 22, 2015

I was honored and very pleased to be asked to present at this year’s American Society of Hematology (ASH) annual meeting. At the Cancer Support Community’s Research and Training Institute we focus on taking what we learn from the data we collect through our Cancer Experience Registry to identify and address the issues impacting people with cancer. My topic was the Multiple Myeloma Patient Experience with Financial Toxicity, a topic of increasing importance to patients who now have multiple (expensive) treatment options and who are living longer.

Then I looked around at the other panelists. They were all medical economists. To be honest, I was a little intimidated at first, but as the discussion proceeded I realized I was there for a reason. The economics of cancer are complex and multi-dimensional. It is critical to understand the factors influencing the costs of having cancer—but it is equally vital to remember that people with cancer and their families are at the true center of everything we do. These are real people experiencing these high costs.  I was there to make sure they were heard. It is by listening to their voices that we understand the deep impact cancer care has on these individuals. Almost half of our Cancer Experience Registry participants report serious concerns about their health care coverage. A third of our participants say they are often or always upset about money issues related to their cancer care. Nearly half of our participants say that no one on their cancer care team ever talked to them about resources available for financial counseling.  And finally, patients experiencing financial toxicity (depleting their savings, borrowing from the retirement funds, etc.) are 2.5 times more likely to be at risk for depression than patients not experiencing financial toxicity.

I left feeling deeply encouraged by the fact that ASH included this discussion in their program and that CSC was a part of it. Financial toxicity is not just a problem patients experience—it is an integral component of cancer care today. It impacts physicians, other team members, cancer centers and insurers. The same can be said for a variety of other issues affecting people with cancer. We need to include the patient experience as directly expressed by patients and caregivers in the programs of the major clinical meetings, not as add ons or presentations at meetings for advocates only, but as data of equal importance to the clinical studies presented.

I hope the presentation I gave is an important first step in this direction. To move forward in improving cancer care, we have recognize that patients are the experts in their own care, listen to their collective voice and incorporate what we hear into the standard of care.