Patient Advocacy


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Patient Advocacy

  1. 1. Patient Advocacy Bruce MacDonald JHYSF Meet the Sarcoma Experts MGH - Nov. 22, 2008
  2. 2. Why Am I Here Today?
  3. 3. Why Advocacy Is Important Especially with Orphan Disease <ul><li>YOU know your body better than anyone </li></ul><ul><li>YOU have a vested interest in your survival </li></ul><ul><li>YOU must take an active role in treatment </li></ul><ul><li>“ The key to surviving...get very very angry, very very smart, and very very organized” </li></ul><ul><li>Norman Scherzer - Founder of Life Raft Group </li></ul>
  4. 4. Sarcoma Foundations <ul><li>JHYSF </li></ul><ul><ul><li> </li></ul></ul><ul><ul><ul><li>Sarcoma Research at MGH </li></ul></ul></ul><ul><ul><ul><li>Meet the Experts Seminar </li></ul></ul></ul><ul><ul><ul><li>Support Available for Patients in Need </li></ul></ul></ul><ul><li>LMSdr </li></ul><ul><ul><li> </li></ul></ul><ul><ul><ul><li>Pre-clinical Research Grants </li></ul></ul></ul><ul><ul><ul><li>Comprehensive List of Clinical Trials </li></ul></ul></ul><ul><ul><ul><li>Excellence in Care Award </li></ul></ul></ul>
  5. 5. Sarcoma Foundations <ul><li>Liddy Shriver Sarcoma Initiative </li></ul><ul><ul><li> </li></ul></ul><ul><ul><ul><li>Pre-clinical Research grants </li></ul></ul></ul><ul><ul><ul><li>Comprehensive List of Clinical Trials </li></ul></ul></ul><ul><ul><ul><li>Esun Newsletter </li></ul></ul></ul><ul><ul><ul><li>Faces of Sarcoma </li></ul></ul></ul><ul><li>Kristen Ann Carr Fund </li></ul><ul><ul><li> </li></ul></ul><ul><ul><ul><li>Surgical Fellowships at MSKCC </li></ul></ul></ul><ul><ul><ul><li>Sarcoma Lab at MSKCC </li></ul></ul></ul><ul><ul><ul><li>Sarcoma Newsletter </li></ul></ul></ul>
  6. 6. Sarcoma Foundations <ul><li>Sarcoma Alliance </li></ul><ul><li> </li></ul><ul><ul><ul><li>Comprehensive list of clinical Trials </li></ul></ul></ul><ul><ul><ul><li>Peer to Peer Network </li></ul></ul></ul><ul><ul><ul><li>Funding for appointment at Sarcoma Center </li></ul></ul></ul><ul><ul><ul><li>Weekly Sarcoma Chat Sessions </li></ul></ul></ul><ul><li>Amschwand Foundation </li></ul><ul><li> </li></ul><ul><ul><ul><li>Funding of Pre-clinical Research </li></ul></ul></ul><ul><ul><ul><li>Comprehensive guidelines for newly diagnosed </li></ul></ul></ul><ul><ul><ul><li>Support Housing Initiative for patients families </li></ul></ul></ul>
  7. 7. Sarcoma Foundations <ul><li>Sarcoma Foundation of America </li></ul><ul><li> </li></ul><ul><ul><ul><li>Fund pre-clinical research </li></ul></ul></ul><ul><ul><ul><li>Advocate for increased government funding </li></ul></ul></ul><ul><ul><ul><li>Educate patients on treatment options </li></ul></ul></ul><ul><li>NLMSF </li></ul><ul><li> </li></ul><ul><ul><ul><li>Fund pre-clinical research </li></ul></ul></ul><ul><ul><ul><li>Advocate for increased government funding </li></ul></ul></ul><ul><ul><ul><li>Educate patients on treatment options </li></ul></ul></ul>
  8. 8. Patient Research Tools <ul><li>NCI Clinical Trials </li></ul><ul><ul><li> </li></ul></ul><ul><ul><ul><li>Research all clinical trials with powerful search tools </li></ul></ul></ul><ul><li>Pubmed </li></ul><ul><ul><li> </li></ul></ul><ul><ul><ul><li>Research peer reviewed papers on any medical issue </li></ul></ul></ul><ul><ul><ul><li>Find info on treatment options, new drugs, basic science </li></ul></ul></ul><ul><li>Google Alerts </li></ul><ul><ul><li> </li></ul></ul><ul><ul><ul><li>Have emails sent once a week for any search topic </li></ul></ul></ul>
  9. 9. Advocacy + Teamwork = 2008 “Excellence in Care Award”
  10. 10. Powerful On-Line Advocacy <ul><li>ACOR ( Association of Cancer On-line Resources ) </li></ul><ul><li> </li></ul><ul><ul><ul><li>836 Leiomyosarcoma subscribers </li></ul></ul></ul><ul><ul><ul><li>Over 159 mailing lists (many forms of Sarcoma) </li></ul></ul></ul><ul><ul><ul><li>Share information on treatment options </li></ul></ul></ul><ul><ul><ul><li>Learn real time info on clinical trials </li></ul></ul></ul><ul><ul><ul><li>How to deal with side effects </li></ul></ul></ul>“ Together we are more, and more effective, than we are separately.” Dr. Doreen Kossove, LMS Patient and active participant in ACOR
  11. 11. Discover Treatment Options Sample of things I found via ACOR and Research <ul><li>Aromotase Inhibitors </li></ul><ul><ul><li>Now in clinical trial with Uterine LMS </li></ul></ul><ul><li>Molecular Profiling </li></ul><ul><ul><li>Now in clinical trial for any cancer tissue </li></ul></ul><ul><li>Chemotherapy Assay </li></ul><ul><ul><li>Clinical trials with ovarian and breast cancer </li></ul></ul><ul><li>Rexin-G </li></ul><ul><ul><li>Now in Phase II clinical trials with sarcoma </li></ul></ul><ul><li>Reolysin </li></ul><ul><ul><li>Now in Phase II clinical trials with sarcoma </li></ul></ul>
  12. 12. Patient Driven Collaboration <ul><li>CTOS - Connective Tissue Oncology Society </li></ul><ul><ul><li> </li></ul></ul><ul><ul><ul><li>Founded in 1995 by wealthy patient to spur collaboration. </li></ul></ul></ul><ul><ul><ul><li>Now over 400 members meet annually </li></ul></ul></ul><ul><li>SARC - Sarcoma Alliance for Research through Collaboration </li></ul><ul><ul><li> </li></ul></ul><ul><ul><ul><li>Founded by members of CTOS </li></ul></ul></ul><ul><ul><ul><li>Enable clinical trial collaboration around the world </li></ul></ul></ul>
  13. 13. Additional Resources <ul><li>Cancer Research Institute </li></ul><ul><li> </li></ul><ul><ul><li>Excellent collaborative foundation </li></ul></ul><ul><ul><li>Dedicated to cancer immunology </li></ul></ul><ul><li>Leiomyosarcoma </li></ul><ul><li> </li></ul><ul><ul><li>Authored by Dr. Doreen Kossove </li></ul></ul><ul><ul><ul><li>Comprehensive guide to LMS treatments </li></ul></ul></ul>
  14. 14. Support JHYSF in 2009 Our team of >70 from 2008
  15. 15. In Memory of Suzanne Ash Kurtz <ul><li>Founder of LMSdr </li></ul>..... “hope alone is not a plan”
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