Thursday, September 11, 2008

International Sarcoma Patient Advocate Network


The International Sarcoma Patient Advocate Network (iSPAN) held its second meeting on October 31, 2007 prior to the annual meeting of the Connective Tissue Oncology Society annual meeting in Seattle, Washington. iSPAN is open to all patient advocacy organizations and committed individuals with the goal of fostering communication and collaboration to improve the lives of those diagnosed with sarcoma. iSPAN serves as a common voice to support sarcoma patient advocacy, legislation and research. This year over 20 individuals met
representing over a dozen organizations. Additionally, the meeting was generously supported by CTOS and by Novartis Pharmaceuticals, Inc.

The meeting began with a brief presentation from Arthur Beckert summarizing the history of iSPAN and the goals the meeting. One tangible outcome of the first meeting of iSPAN was the first comprehensive directory of sarcoma organizations. He hoped that advocacy groups would agree that many issues could be better addressed if sarcoma advocacy groups would work together. These include raising awareness, assuring that all sarcoma patients receive the best care in the most appropriate setting, increased funding for research,
giving more flexibility for drug research and approval for rare diseases, tissue banking, and patient registry.


Chappie Conrad, MD an orthopaedic surgeon at the Seattle Cancer Care Alliance and founder of the Northwest Sarcoma Foundation welcomed the group. He complemented everyone’s efforts and believes that it is very important for the provider community to support and work closely with patient advocates. Although there have been improvements in sarcoma care, he believes that the grading system needs to improve and there needs to be new and better drugs.

Raising Sarcoma Awareness

The group next talked about raising awareness about sarcoma in general and about the unique needs of sarcoma patients. Currently there are a number of sarcoma awareness events in the US, mostly in June and July. One step in raising awareness would be for the sarcoma community to agree on a common time for awareness events. Bruce Shriver of the Liddy Shriver Sarcoma Initiative gave a presentation about Team Sarcoma in July and the incredible growth this has had during the past few years.

The group agreed that designating July as Sarcoma Awareness Month would give everyone a long period of time to put together events to bring attention to sarcoma. Everyone agreed that there was no pressure or need for any organization to modify their existing calendar. However it is hoped that organizations would organize events and activities that would generate local, regional or national press coverage. These events could be coordinated with existing activities such as Team Sarcoma or could be held on their own. Events could include walks, runs, picnics, educational session at hospitals, and even include governmental proclamations of July of Sarcoma Awareness Month.

ARIAD – Upcoming Phase III Trial of Deformlimus

Camille Bedrosian, MD of ARIAD next gave a presentation on the upcoming Phase III trials of Deforolimus (formally AP23573). The trial will be open to those with metastatic soft tissue and bone sarcomas. Deforolimus is an mTOR inhibitor that affects cell growth, division, metabolism and angiogenesis. By blocking mTOR the cancer cells will starve and die. ARIAD recently received FDA approval for the Phase III study design and is starting to centers through out the world to conduct the clinical trial. They hope to enroll 650 patients
at 125 sites. More information can be found at

Advocacy Initiatives

Mark Thornton, MD next gave an overview of the Sarcoma Foundation of America and it efforts to improve the FDA’s drug approval process for rare diseases. SFA along with the Alliance Against Alveolar Soft Part Sarcoma has petitioned the FDA to modify its drug approval process for rare diseases. This “Citizen’s Petition” can be approved through an administrative process and does not need changes in current regulations or law. Briefly this petition outlines a streamlined process for testing and approval for new agents for rare cancers. (Please contact the Sarcoma Alliance if you would like more information about this initiative)

Estelle Lecointe, AFPS, Ensemble contre le GIST gave a presentation on activities of the GIST community in France. The most important is their support of two studies.

What’s Next?

Everyone agreed that it is important that the advocacy community work together on the many issues of common interest. It is equally important that iSPAN serves as a vehicle of support for the sarcoma community so that every organization can continue to grow and prosper, retain their independence and stay true to their mission.

Mission Statement - March 2008

iSPAN is compromised of individuals and organizations from around the globe that desire to work together to improve communication, share information and address legislative and regulatory matters affecting sarcoma patients, medical professionals, and researchers. iSPAN members complement and benefit each other through shared communication and networking. In return, iSPAN serves as a common voice for sarcoma advocacy utilizing our strengths and diversity.

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