Friday, March 27, 2009

Letter to the National Cancer Institute

This month, 20 sarcoma advocacy organizations sent a letter to Dr. John Niederhuber, director of the National Cancer Institute, petitioning the NCI to prioritize funding for sarcoma research. The letter referred to President Obama’s renewed call for finding a cure for cancer, and the Obama/Biden initiative to include a focus on rare cancers. 

In the past, sarcoma research has not been a priority of government funding. For example, the sarcoma community worked with NCI to develop the Sarcoma Progress Review Group. This group published a report in 2004, but the recommendations have not been adequately implemented.

As another example, cooperative groups are funded mostly by NCI, and when funding was reduced for these groups in the past few years, they eliminated clinical trials for rarer cancers including sarcomas. Right now (based on a search on major adult cancer cooperative groups such as SWOG, ECOG and CALGB have no frontline treatment clinical trials open for sarcomas.

The letter asked for the following research aims to be implemented:
• That sarcoma be added to those cancer types evaluated as a part of the NCI Cancer Genome Atlas Project.
• That new ARRA grant applications and other future grants pertaining to sarcoma are given preference.
• That sarcoma-related research grants currently approved but not fully funded by NCI be funded up to levels requested in the original applications.
• That new funding for expanding research training opportunities include a focus on sarcoma.
• That new investigator funding include a focus on sarcoma.

The letter petition was spearheaded by the Sarcoma Foundation of America, and was signed by these organizations:
• BeatSarcoma
• Connective Tissue Cancer Network
• Desmoid Tumor Research Foundation
• Foster Foundation
• GIST Cancer Research Fund
• GIST Support International
• Hope Fund for Sarcoma Research
• Kristen Ann Carr Fund
• Polish Sarcoma Patient Advocacy
• National Leiomyosarcoma Foundation
• Northwest Sarcoma Foundation
• Sarcoma Alliance
• Sarcoma Alliance for Research Consortium
• Sarcoma Foundation of America
• The Alliance Against ASP Sarcoma
• The Liddy Shriver Sarcoma Initiative
• The Life Raft Group
• The sPECial Fund
• The Swing Away Foundation
• WWWW Foundation, Inc. (QuadW)

The American Recovery and Reinvestment Act (ARRA) greatly increases funding for NCI, which in turn provides the opportunity to greatly increase funding for sarcoma research. The sarcoma community spoke with one voice in requesting that NCI consider sarcoma to be a priority. It will be up to us all to continue advocating for this goal.

Joan Darling, Ph.D.
Sarcoma Alliance Board President

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