/Global GIST Advocates Convene at LRG Headquarters

Global GIST Advocates Convene at LRG Headquarters

By | 2018-06-22T12:35:35+00:00 December 28th, 2017|Advocacy, Global, News, Newsletter|

New Horizons 2017The Life Raft Group had the pleasure of hosting the global New Horizons GIST meeting this year in our Wayne, New Jersey office. This international meeting traditionally gathers global GIST advocates with the shared vision to unify and support patient advocacy efforts and hear advances in research and treatment of GIST. 31 participants from 15 countries attended this year’s convocation.

Our theme was focused on how disease advocacy organizations can utilize real world evidence from patient health data. We kicked off the meeting with a presentation of a survey we conducted among 29 global advocates and the important topics that address unmet needs of the GIST population around the world.

Drs. Suzanne George, Dana Farber Cancer Institute, and Bill Tap and Ciara Kelly, Memorial Sloan Kettering Cancer Center, provided a lot of hope that there are emerging therapies for GIST currently in clinical trials with the aim of targeting specific mutational types. Additionally, we learned about the role of liquid biopsy and circulating tumor DNA in GIST and its implications on treatment.

The three clinicians highlighted innovative approaches to prolong survival by sharing various case studies of GIST patients they treated such as those with localized disease, metastatic disease, and SDH-Deficient GIST. This interactive panel among the clinicians was important for advocates to see how critical a collaborative medical team can be in the treatment of GIST cases as well as the role of a tumor board.

As we saw from the start of the conference about the importance of collecting data from randomized clinical trials to help bring drugs to market for the survival of patients, we also focused on the importance of other forms of real world data in the decision- making process made by clinicians and patients. A panel of experts spent time highlighting each of their perspectives in what real world data means to them and its importance in making an impact on survival. Moderated by Norman Scherzer, Executive Director of the Life Raft Group, the panel consisted of Rodrigo Salas, Fundacion GIST Mexico; Dr. Suzanne George, Dana Farber Cancer Institute; Dr. Theresa Mullin, FDA Center for Drug Evaluation and Research; and Dr. Carl Asche, Center for Outcomes Research at University of Illinois College of Medicine. A best practice presentation was provided by Michelle Durborow, The Life Raft Group, about the collaborative intersection of patient, clinical and pharma perspectives in understanding the patient experience by examining data from a patient registry. She presented ways to utilize a patient registry as a valuable tool  in understanding the unmet need of patients by identifying barriers to treatment.

With all the updates in GIST treatments and molecular testing emphasized throughout the meeting, one key question remains among global advocates:  How are they to access diagnostic testing and treatments? Pat Garcia Gonzalez of The Max Foundation shared an update about her organization’s strategy to tackle this issue. Her aim is to decrease mortality through humanitarian access to treatment, care and support.

More best practices were presented as Gerard van Oortmerssen, Chairman of Board of Contactgroep GIST in Netherlands shared a novel tool he uses in his research to search patient forums for common themes that patients discuss, and the importance of how we can address those themes with programs and support. Amy Bruno-Lindner, President of GIST Support Österreich Austria, engaged the group in an interactive exercise in how we can improve our communication as patient advocates with the patients we serve.

Lastly, we divided conference participants into small groups based on region and country-type, as we explored how to tackle the issues that came out of the pre-meeting survey.

We aim to continue to tackle these issues throughout the year as we believe it is important to mobilize the community on an ongoing basis to support our efforts.

Many thanks to the New Horizons sponsors, Blueprint Medicines, Novartis and Pfizer for their continued support and vision to help us provide vital information to strengthen our global efforts to help GIST patients survive.

Lastly, a thank you to the steering committee who worked synergistically over the course of the year to make this meeting a success: David Josephy, GIST Sarcoma Life Raft Group (Canada); Piga Fernandez, Alianza GIST (Chile); Markus Wartenberg, Das Lebenshaus (Germany); Martin Wettstein, Swiss GIST Group (Switzerland); Ginger Sawyer, GIST Support International (USA); and Norman Scherzer, The Life Raft Group (USA).

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