From March 25 through 28 representatives of 12 Latin American countries got together in Miami with representatives of The Life Raft Group, The Max Foundation, American Cancer Society, CODEVIDA, SixDegrees and the pharmaceutical industry in order to update themselves about GIST treatment and get trained on how to improve education, advocacy and patient support for the GIST community in Latin America.
Regarding GIST treatment, the agenda included interesting topics like GIST treatment updates, side-effects management, substandard drugs, and the Latin American reality regarding treatment access.
Representatives were trained to continue working in their countries in patient support and advocacy. They outlined the importance and goals of their advocacy work and worked through the various levels of advocacy, covering topics such as public policy formation, building strategic alliances, engagement with government authorities and patient navigation.
Roberto Pazmino from The Life Raft Group presented the LRG Patient Registry, an extraordinary tool which uses patient-provided medical data to track trends in GIST treatment and dosage. It is also a very valuable asset to GIST researchers in areas like the GIST Collaborative Tissue Bank, which Roberto Pazmino also presented to us. 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 incidence and survival of the GIST community in Latin America, both of which are unknown in the region. Sara Rothschild, LRG Global Relations Director, presented the newly created Alianza GIST web page, where all local organizations are able to register, participate, share experiences, create forums and send questions and concerns to one another.
Finally, with the guidance of Bob Chapman, Director of US Government and Multilateral Global Health Advocacy of American Cancer Society, Alianza GIST was able to establish three targeted mission areas:
1.Education and Support
2.Advocacy and Access
3.Research and Surveillance
Additionally, Alianza GIST began work on setting up a core infrastructure, in which participants created different committees to further the main vision of the survival of GIST patients in Latin America.
Meeting attendees included:
Melisa Biman and Sandra Mesri (Argentina), Vicky Ossio (Bolivia), Piga Fernández (Chile), Rafael Vega and María Helena Matamala (Colombia), Michael Josephy (Costa Rica), Silvia Castillo de Armas (Guatemala), Xiomara Barrientos (Honduras), Rodrigo Salas (México), María Teresa Ponce (Nicaragua), Maurice Mayrides (Perú), Alejandro Miranda (Dominican Republic), María Isabel Gómez (Venezuela), Norman Scherzer, Sara Rothschild and Roberto Pazmino (The Life Raft Group).
The invited panelists were:
Dr. Jonathan Trent, Dr. Elizabeth Fontao, and Dr. Monica García-Buitrago, from the Sylvester Cancer Center. Erin Schwartz from The Max Foundation, Debbie Freire from Novartis, Margalit Edelman from Pfizer, Siobhán Ní Bhuachalla from SixDegrees Healthcare Consulting, Feliciano Reyna from CODEVIDA, and Bob Chapman and Dr. Daniel Armstrong from the American Cancer Society.
All participants were able to share experiences and were motivated to continue working on behalf of GIST patients in Latin America. We look forward to continuing our outreach, advocacy, and program activities in the region.
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