International Patient Meeting Report - July 2014, Zurich, Switzerland

A Gastro-Intestinal Stromal Tumour is rare, but you are not alone!

New Horizons takes place in Zurich, Switzerland

Kindly prepared by Sara Rothschild.

With the beautiful mountains of Switzerland and Lake Zurich in the background, 44 GIST Patient representatives from 28 countries and 32 patient groups/organizations convened in Zurich for the New Horizons GIST meeting from May 14-17, 2014.

2014 GIST New Horizons Conference Participants

New Horizons Meeting Participants

The GIST New Horizons Conference is an essential event where patients from the international GIST patient community come together, can interact with top experts in an informal setting, have access to state-of-the-art medical and scientific information prior to the ASCO conference and can exchange best practices together in terms of patient advocacy.

As Dr. David Josephy of Life Raft Group Canada stated:

The recent New Horizons GIST meeting was the strongest ever, in terms of the number of countries represented, the strength of the international interactions, and the ‘bench-strength’ of the doctors and researchers present.

There was a lot of optimism in the air, with presentations describing new drugs under development, possible combination-therapy approaches, and advances in molecular diagnostics.

It was also exciting to see the innovative ideas of GIST support groups around the world, such as the French group’s success in sponsoring GIST research even on a small budget, and the patient-driven establishment of the first wild-type GIST clinic in the U.K.

Over the course of the three days, participants attended sessions that dealt with key topics including: GIST Overview and Diagnosis, Localized Operable Primary Tumors, Knowledge for Advocacy, Metastatic Advanced Disease, Progression of Advanced Disease under Drug Treatment, Quality of Diagnosis, Treatment and Care and How to Work with the Media.

Advocacy breakout sessions on discussing and collecting needs/challenges/performances of the Global GIST patient community brought participants together to formulate strategies for the future.

Norman Scherzer, Executive Director of the Life Raft Group was joined by Dr. Jonathan Fletcher and Dr. Sebastian Bauer, members of the Life Raft Group Research team to present on Following the Research Journey in GIST.

Dynamic presentations on projects and initiatives around the globe promoting advocacy from Canada, Italy, the Netherlands, France, the United Kingdom and the United States highlighted the international scope and reach of New Horizons, and its value to worldwide GIST community.

One of the most significant accomplishments of the conference was the Zurich Declaration. This document sets a precedent for the global patient community to assure that GIST patients are getting safe, quality effective medication. The principles were developed to assure that the transition to generic drugs for GIST patients protects them as the patents for the lifesaving drugs that have improved the management of GIST, including Gleevec (imantinib), Sutent (sunitinib) and Stivarga (regorafenib) expire.

Although generally generic drugs are welcomed by a patient population as they have the potential to dramatically lower costs and improve patient access to lifesaving drugs, there are many concerns about the preservation of quality and patients’ rights to optimal treatment.

The declaration was developed, agreed upon and signed by representatives of worldwide GIST Patient Advocacy Groups, and included eleven specific principles that include placing the patient first, providing corporate transparency, practicing the “precautionary principle”, maintaining good manufacturing practices, evaluating “bioequivalence”, treating GIST as a unique disease entity, evaluating efficacy, assessing patient stress, informing patients of changes to their drug treatment, practicing pharmcovigilance, and honoring the “no substitutions” principle.

The New Horizons GIST Steering Committee developed a strategic plan to share these principles and advocate for action as we move closer to the dates when the patents on these lifesaving drugs expire.

For details of these principles and to view the 2014 Zurich Declaration in its entirety, click here.


Posted: 02/07/2014