Understanding the role of mutations and biomarker testing is one of most important things patients must learn. Uncovering the driving force behind each individual’s tumors is not just important, it is critical. Biomarker testing is an opportunity to improve and optimize treatment – possibly avoiding unnecessary treatments and getting to the right treatment sooner. Currently, biomarker testing rates in the gastrointestinal stromal tumor patient population are relatively poor – only about 41% of patients have had testing done. The Life Raft Group Patient Registry, which is a group of extremely proactive patients, notes only about 58% of patients are aware of their mutation.
This is why the LRG is launching the It’s Time campaign. It is time to stop talking and take action to assure patients get tested. The goals of this campaign are to improve the understanding of biomarker testing in the cancer community and increase the number of patients tested.
In this post, we present our declaration for GIST pertaining to testing.
It’s time to bring together our physician community to raise their voices!
It’s time to rally our physician community to raise their voices and advocate for biomarker testing to be the standard of care for GIST patients. That is why The Life Raft Group initiated a new declaration. We utilized Dr. David Josephy, GIST Sarcoma Life Raft Group Canada, as he has been instrumental in mobilizing physicians in Canada around the topic of mutational analysis. Additionally, he helped with the drafting of previous declarations we have created through the global New Horizons GIST conferences.
It was wonderful to see the energy among the whole team working through the statement together. They spent about half the call working on it, building off each other’s comments and brainstorming ideas. It is our hope that physicians across the globe will join us in endorsing the following declaration.
Our Declaration on Testing Awareness
On April 30, 2021, The Life Raft Group Medical Advisory Board convened. As part of that meeting, the group endorsed the following declaration, drafted initially by Dr. David Josephy of GIST Sarcoma Life Raft Group Canada.
The discovery of KIT mutations as oncogenic drivers in GIST led to revolutionary advances in treatment in the 2000 era, with imatinib as first-line therapy. Since that time, it has been discovered that many GISTs are driven by different mutations or gene fusions in PDGFRA, BRAF, NF1, FGFR or NTRK genes, or by loss of SDH function. For the substantial fraction of cases that are not driven by KIT or a subset of PDGFRA mutations, imatinib is rarely, if ever, effective. Mutational testing is the essential tool for identifying GIST driver mutations. Once considered primarily a research technique, mutational testing is now a key diagnostic tool with direct relevance to the choice of therapy in GIST. Currently, there are seven drugs FDA-approved for the treatment of advanced GIST but the use of three of these drugs is restricted to GISTs with a specific type of driver mutation.
We recognize the importance of outlining a standard of care to make these vital diagnostic tools available to all GIST patients and acknowledge that it is aspirational in many parts of our global community. It is our primary purpose in drafting this declaration to call attention to the issue, and to rally the physician community to raise their voices with the goal of creating an optimal standard of care.
Optimal GIST care includes mutational testing as an essential component of GIST pathology for patients considered for medical therapy. Mutational testing must be incorporated as a mandatory component of GIST pathology. Failure to carry out mutational testing could lead to suboptimal care.
If you are a physician who would like to add your voice to this declaration, please contact Sara Rothschild at firstname.lastname@example.org
The Life Raft Group Medical Advisory Board Members include:
Michael Heinrich, MD is a medical oncologist and Professor of Medicine and Cell/Developmental Biology at Oregon Health and Science University (OHSU School of Medicine.
Sameer Rastogi, MD is a faculty member in the Department of Medical Oncology at All India institute of Medical Sciences (AIIMS), New Delhi, a leading tertiary care center in North India.
Peter Reichardt, MD is Assistant Professor and Head of the Department of Oncology and Palliative Care at the Helios Klinikum Berlin-Buch in Berlin, Germany, and is Director of the Cancer Center Berlin-Buch and the Sarcoma Center Berlin-Brandenburg.
Gary K. Schwartz, MD is a board-certified medical oncologist and internist and chief of Columbia University Medical Center’s Division of Hematology and Oncology.
Jason Sicklick, MD, FACS is an NIH and FDA R01 funded investigator, Professor of Surgery, Executive Vice Chair of Research in the Department of Surgery, and Co-Leader of the Sarcoma Disease Team at the UC San Diego Moores Cancer Center.
Jonathan Trent., MD, PhD is the Associate Director for Clinical Research, the Director of the Bone and Soft-tissue Sarcoma Group and Medical Director of the Precision Medicine Initiative at the Sylvester Comprehensive Cancer Center.
If you would like to talk to someone about mutational testing, please contact our Director of the Life Raft Group Patient Registry, Denisse Montoya at email@example.com