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Archive

August 2008

International GIST community meets in Italy

Baveno, Italy was the site of the sixth patient summit meeting which brought together GIST and CML patients from around the world. This meeting, sponsored by Novartis, exhibited the dramatic growth in maturity of the patient organizations represented. The diversity and level of excellence of their presentations spoke to the progress patients are making in taking control of their own lives and impacting the quality of care that patients receive. A few highlights:

France: Estelle Lecointe presented a booklet on patient compliance which is being translated into other languages and will serve as a template for other organizations.

Canada: David Josephy presented an update on the formation of a new patient organization, GIST Sarcoma Life Raft Group Canada and the logistics of coordination in such a vast country.

U.S.A.: Norman Scherzer presented, on behalf of Tricia McAleer and Sara Rothschild, a review of the first year of Life Raft Group’s live educational webcasts which are archived on the LRG website.

Germany: Markus Wartenburg presented the experience of Das Lebenshaus in conducting round table ring tests for pathologists as a quality control and training technique.

U.K.: Judith Robinson presented a grassroots telephone system developed by her son to facilitate communications with GIST patients and caregivers at their homes.

Switzerland: Ulrich Schnorf presented the progress in establishing a network of clinics staffed by GIST specialists.

The quality of the expert panels contributed greatly to the material presented and to the extraordinary interaction between patients and physicians. Contributing faculty included: Dr. Jonathan Fletcher, USA; Dr. Maria Debiec- Richter, Belgium; Dr. Peter Reichardt, Germany; and Dr. Paolo Casali of Italy.

The Life Raft Group was also invited to present its latest data on the relationship between imatinib dosage levels and survival (Highlighted in our March 2008 newsletter). The focus of the presentation was the link between higher doses and lower progression which in turn was linked to lower mortality. Of great concern was the lack of any drug (or combination of drugs) that significantly impacts upon survival once imatinibprogression occurs. The discussion then turned to the differences between using starting dosage (the formal MetaGIST study) and actual dosage (the Life Raft Group Study). The concern was that only a new clinical trial could resolve these statistical differences between the LRG and the traditional MetaGIST consortium; that such a trial was unlikely and at best would take another ten years to produce new survival data.

Attention then turned to a call to action, the cornerstone of which was to introduce routine plasma level testing of imatinib as a practical way of determining which of the low dosage patients actually might require an increase. The result was the Global GIST Patient Community Declaration:

Baveno, Italy
28th June 2008

The GIST patient advocacy community is concerned about the current dosage levels of imatinib which patients are receiving.

We propose as a first step that for each patient being treated data are gathered about

KIT/PDGFR mutational testing at diagnosis Routine plasma testing of imatinib levels

We expect doctors treating GIST patients to use these data to inform decisions on the appropriate dose level of imatinib for all patients.

Signed by patient representatives from: Brazil, Canada, France, Germany, Hungary, Italy, Lithuania, Poland, Switzerland, U.K., U.S.A. (both GSI and LRG)

Plasma Testing

Plans are now underway to conduct routine mutational and plasma testing of patients on imatinib. The Life Raft Group has joined forces with a number of patient organizations to implement the aforementioned declaration. Plans include hosting an international development conference with key American and European laboratories currently performing plasma level testing to create a common testing protocol and to identify plasma reference levels through a collaborative effort.

Other plans include forming a subgroup with the French organization, Ensemble Contre le GIST, the Swiss organization, GIST-Selbsthilfegruppe Schweiz) and several other patient organizations to draft a working protocol for consideration by the entire international GIST community.

In addition, the LRG is setting up a comprehensive survey that includes evaluating long-term side-effects, patient compliance, mutational testing and plasma level testing and attempts to correlate the relationships between these four components. Priority will be given to evaluating long-term survivors to try to determine what sets them apart, particularly with reference to plasma level and mutational status.

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