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2006 CTOS

2006 CTOS. Changing Role of Patient Organizations In Cancer Research. Announcement. A cure for all cancers has just been discovered!. GO HOME !. Just kidding. On the other hand, One has to wonder. Life Raft Group. For patients with GIST (Gastrointestinal Stromal Tumor).

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2006 CTOS

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  1. 2006 CTOS Changing Role of Patient Organizations In Cancer Research

  2. Announcement A cure for all cancers has just been discovered!

  3. GO HOME !

  4. Just kidding On the other hand, One has to wonder

  5. Life Raft Group For patients with GIST (Gastrointestinal Stromal Tumor)

  6. Our MissionIs Survival

  7. Keeping GIST Patients Alive By Ensuring • That no one dies because they cannot access treatment • That no one dies because of their ignorance or that of their physician • That research is coordinated to urgently find a cure

  8. LRG Research Has Two Parallel Tracks. • We conduct our own research using medical updates provided by patients and caregivers • We direct a coordinated strategy by the LRG world class research team to find a cure for GIST that will serve as a model for other cancers

  9. We conduct our own research using medical updates provided by patients and caregivers

  10. LRG’s New Medical Database

  11. Why The Life Raft Group Conducts Its Own Research • Timeliness • Patient Relevance • Information not available in clinical trials • Survival

  12. History Of Life Raft Group Research • Gleevec Resistance: • Introduced evaluation of actual dosage as opposed to intended (starting) dosage • Evaluated relapse amongst metastatic GIST patients • Determined that there was a relationship between dosage and relapse • Growing medical data-bases for adult and pediatric GIST

  13. History Of Life Raft Group Research • Gleevec Response Rates: First to report Gleevec Effectiveness for GIST patients • Gleevec Side Effects: • Designed Severity Rating Scale for Patient Self Evaluation • First to report that Side Effects Got Better Over Time • First to report Gender Differences in Side Effects

  14. The LRG ability to collect patient driven data and publish it on our website and in our newsletters had unintended consequences • Turned the flow of clinical trial information upside down: patient and patient’s doctor get the information first • Increased the leverage of the LRG regarding clinical trials

  15. Time does not permit a more detailed discussion of the research we conductusing medical updates provided by patients and caregiversInstead I would direct my presentation to:

  16. We direct a coordinated strategy by the LRG world class research team to find a cure for GIST that will serve as a model for other cancers

  17. We have not made enough progress with the traditional approach to research Too many are still dying

  18. Rate Per 100,000 HeartDiseases Pneumonia/Influenza Cancer Change in the US Death Rates by Cause, 1950 & 2001 CerebrovascularDiseases * Age-adjusted to 2000 US standard population. Sources: 1950 Mortality Data - CDC/NCHS, NVSS, Mortality Revised. 2001 Mortality Data–NVSR-Death Final Data 2001–Volume 52, No. 3. http://www.cdc.gov/nchs/data/nvsr/nvsr52/nvsr52_03.pdf

  19. Traditional Research Approach • Donate money to an institution in the name of research, perhaps with a specific disease designation or • General call for proposals from the research community: Individual projects are selected for funding (typical government approach)

  20. What’s wrong with the traditional research approach? • High overhead costs: from 50 to 75% • No overall strategic plan; lack of coordination • Little accountability • Lack of urgency

  21. How Does the Life Raft Group Strategy Address the Shortcomings of The Traditional Research Approach?

  22. We Reduced High Overhead Costs The LRG reduced overhead costs in our research grants from between 50 to 75% down to no more than 10%

  23. We Addressed A Lack of Strategy and Coordination • We assumed a leadership role • We brought together the best scientists in the world • We told them that if they created a coordinated strategic plan, and agreed to cooperate, that we would fund it • They did • We did

  24. Our Own Research Team Includes World Class Scientists From • Catholic University, Leuven Belgium • Cleveland Clinic • Dana-Farber Cancer Center/Brigham & Women’s Hospital, Boston • Memorial Sloan Kettering • Oregon Health Sciences University/VA Hospital • Stanford University

  25. Our Research Team Members Have Dual Roles • To Effectively Implement Their Own Institution’s Research Component of Our Strategic Plan • To Coordinate a Priority Research Area Across Institutional and National Boundaries

  26. Our Research Team Created A Strategic Plan • We committed two year grant awards to implement it • We published the plan on our website: www.liferaftgroup.org

  27. We Funded Two Tissue BanksTo Support The Search For A Cure • At Memorial Sloan Kettering for pediatric GIST • At Stanford University for adult GIST

  28. We Introduced Accountability to the Research Grant Process • We created six month funding cycles and required a satisfactory progress report to justify further funding • We are prepared to shift funds from less promising to more promising areas

  29. We introduced asense of urgency to the search for a cure for GIST • We created incentives to reward and accelerate progress by building in accelerated and supplemental funding of promising breakthroughs President Nixon declared war on cancer in 1971, 35 years ago.

  30. Our evaluation so far April 18, 2006 Dear Norman, In the Life Raft Group Research plan of action, one finds both true dedication and conviction that can only emerge from one’s heart as well as efficiency and professionalism… It seems to me that this combination is the best ground for successful research and I would like to express my sincere respect and admiration for your efforts and the efforts of your group. I have no doubt that you will succeed in making a significant contribution to GIST research … Yours truly, Dan Vasella, M.D., CEO, Novartis

  31. GIST Is The Perfect Model For Demonstrating How To Cure Other Cancers • Relatively simple and increasingly understood mechanism of cancer mutations • Growing list of targeted drugs to address these mutations • Innovative research strategy • Unprecedented collaboration between researchers, pharmaceutical companies and patients

  32. Patient Roles in Cancer Research Have Evolved • Passive Participant • Some Input • Seat at the Decision Making Table • Seat at the Head of the Decision Making Table

  33. Food for Thought Can we distinguish between acts of outrage that make us feel good and acts of intervention that actually change something ?

  34. ThanksFor Listening The Life Raft Group

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