Patients and caregivers throughout the country will observe this July as Sarcoma Awareness Month. Numerous events have been planned to raise the national consciousness about what we can all do to promote scientific, philanthropic, and grass roots involvement in finding effective treatment strategies for sarcomas.
In November 2007, 20 advocates met at the Connective Tissue Oncology Society meeting in Seattle to build cooperation among sarcoma nonprofits. We agreed that July should be designated Sarcoma Awareness Month. An alliance of sarcoma physicians supported us. Since 2007 efforts have continued to get a resolution introduced in Congress to establish July as Sarcoma Awareness Month. Perhaps this is the time for Congress to demonstrate it can come together and pass a resolution that transcends politics.
As these events are launched this July, it is also a good time to reflect on the efforts of patient advocacy groups nationwide and furthermore at the local level where they involved in a broad spectrum of initiatives to fund research and provide the kinds of services—both in terms of online information and community outreach—that are invaluable for patients and families struggling to cope with sarcomas. And community is what it’s all about—building in an incremental but nevertheless significant way the kinds of commitment and sharing of values strengthening the bond between patients, their families and caregivers. This network of support is a challenge to build but my experience with the Life Raft Group suggests how patient advocacy groups can reach a higher level of service. And it can be achieved from the modest beginnings almost every patient advocacy group has experienced as they gradually “bootstrap” their way to a larger and more comprehensive agenda.
Consider, for example, the Registry of the LRG. The Life Raft Group Patient Registry has over 15 years of self-reported and clinical data encompassing 35 years of patient history crossing institutional boundaries. The Patient Registry has 1703 patients from 67 countries, with the youngest patient diagnosed at 5 and the oldest at 92 and represents 12 different mutational types. This is an extraordinary effort of collaboration and compilation, a testament to the diligent gathering of data. As the LRG notes on its description of the Registry: “We have created a unique Patient Registry. All of our information comes directly from patients or caregivers. Using this data we examine questions that are not being answered quickly enough by current trials or that are not being looked at in clinical trials. We also monitor the latest treatments for early indications of a response. We look for treatment and response trends that can help our members reach tomorrow’s cure. We reduce the lethal lag time between discoveries of important data to communication to the GIST community.”
However, as we observe Sarcoma Awareness Month, it is hardly a time for self-congratulation but for rethinking our mission statements and asking ourselves how close we are coming to fulfilling all of those lofty goals we set for ourselves as we strive toward the cure that always seems to elude our grasp but perhaps soon will be within our reach.
Jonathan C. Trent, MD, PhD