On behalf of the Cancer Support Community, an international nonprofit organization that provides support,education and hope to more than one million people affected by cancer each year, we appreciate the opportunity to respond to the request for comments regarding ICER’s draft report of treatment options for relapsed or refractory multiple myeloma.
As the largest direct provider of social and emotional support services for people impacted by cancer, and the largest nonprofit employer of oncology mental health professionals in the United States, CSC has a unique understanding of the cancer patient experience. Each year, CSC serves people affected by cancer through its network of 44 licensed affiliates – more than 120 satellite locations, a toll free telephone helpline and a vibrant online community- and delivers more than $40 million in free, personalized services each year.
Additionally, CSC is home to the Research and Training Institute – the only entity of its kind focused solely on the cancer patient experience. The Research and Training Institute has contributed to the evidence base regarding the cancer patient experience through its Cancer Experience Registry®, various publications and peer-reviewed studies on distress screening, and the psychosocial impact of cancer and cancer survivorship, to name a few. This combination of direct services and research uniquely positions CSC to provide organizations like ICER with feedback based on evidence as well as real world impact.
CSC acknowledges ICER’s intent to seek multi-stakeholder input as a part of the process involved in assessing the value and effectiveness of different oncology treatment regimes. However, we encourage you to seek input earlier in the process and in a more comprehensive way. Both the conversation on value and multi-stakeholder engagement are at the core of CSC’s work on access, and we are eager to work with you to move appropriate solutions forward.