Posted by Erin Schwartz on April 11, 2012
From March 25 through 28 representatives of 12 Latin American countries met in Miami and received comprehensive training on GIST treatment and how to improve education, advocacy and patient support for the GIST community in Latin America.
Prior to the meeting, representatives performed a gap analysis in which they identified areas in their countries in which access was a problem. At the meeting, they outlined the importance and goals of their advocacy work to close the gaps and worked through various levels of advocacy, covering topics such as public policy formation, building strategic alliances, engagement with government authorities and patient navigation.
A Patient Registry was presented by The Life Raft Group. This tool will be used by Alianza GIST to track medical trends in GIST treatment and dosage. It will be a valuable asset to GIST researchers in areas like the GIST Collaborative Tissue Bank, which is a program that provides free mutational testing for GIST patients worldwide as well as tissue being donated to research. Initiatives like the Patient Registry and the Tissue Bank are two ways Latin American GIST patients can participate and be active in life-saving research. These valuable programs enable Alianza GIST to collect important statistics regarding the prevalence and survival of the GIST community in Latin America, both of which are unknown in the region.
With the guidance of Bob Chapman of American Cancer Society, Alianza GIST was able to establish three targeted mission areas: Education and Support, Advocacy and Access, Research and Surveillance. “Our vision is the survival of Latin American GIST patients and that no one faces this disease alone” affirmed Vicky Ossio from Bolivia.
The sharing of best practices and the commitment by participants motivated this group to work harder with their outreach, advocacy, and program activities in Latin America. As Piga Fernández from Chile said: “This is a new starting point for our work as a coalition. To give Latin American GIST patients a better quality of life, we have to engage multiple sectors in order to make it possible that the scenery in which patients navigate treatment is a dignified one and an effective one”.