Advocacy continued to be an important focus in 2015. Our initiatives expanded globally, with the overall goal of assuring that all GIST patients have access to quality medical treatment.

The LRG continued to forge strategic alliances with other organizations, joining OVAC (One Voice Against Cancer) and participating in their Lobby Day in Washington, D.C., with one staff member and four LRG members in attendance.

Strengthening our international ties, meetings with an international focus convened in Miami including the sixth annual Alianza GIST gathering with representatives from ten Latin American countries, and New Horizons, attended by 30 representatives from over 20 countries. A new alliance was made with members of Henzo Kenya, a CML and GIST advocacy organization headquartered in Nairobi, Kenya.

ovacThe LRG attended events like the DIA (Drug Information Association) Annual Meeting, and the National Organization for Rare Disorders (NORD) conference, networking with other patient advocates and life science professionals from around the globe to develop strategies around key issues impacting the development of safe and effective medical products and therapies for patients.

Attendance at both the Pfizer Global Oncology Advocacy Innovators Meeting and the Partnering for a Cure meeting sponsored by Faster Cures enabled the LRG to not only learn new strategies for expediting innovative treatments, but also to present the advantages of our Patient Registry platform.

We continued to collaborate with CTTI (Clinical Trials Transformation Initiative) to develop new paradigms for clinical trials, participating in the CTTI Patient Groups and Clinical Trials Summit, and serving on the Mobile Clinical Trials task force.

On the international front, LRG Global consultant Piga Fernandez, was an instrumental part of a movement called “Los enfermos tambien marchan” (Patients March) helping to pass legislation in Chile, specifically the Ricarte Soto law, which assures that the government will pay for high cost treatments for rare and chronic diseases like GIST. Piga was present at La Moneda, the Chilean equivalent of the White House when President Michelle Bachelet signed the bill into law. Additionally, Piga attended the International Seminar on Cancer Policies in South America, participating in a roundtable focuses on the role of patients and patient organizations in cancer prevention and control.

Mary Garland
Author: Mary Garland