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WE DON’T WANT TO RAISE AWARNESS AWARNESS that leads to ACTION SO WHAT?
What do we want them to know What Myeloma is! What its impact on the individual and family is! What its impact on society is! Myeloma standard of care evolved rapidly… Elevates overall cancer care
What action do we want them to take Give us $ Increase the services we provide (Telephone support) Change legislation Increase drug availability Improve QOL Include not only Health QOL but Personal QOL Better design clinical trials Improve care baseline
What are the needs of the patients Global need to increase access to drugs Patient activity based difference Patients that are still working need some accommodation Teleworking Some patients need added mental and emotional support Reintegrating to society and Chronic nature of myeloma Caregivers need care as well Comorbidity team care When patients live longer they have other health needs Novel therapies like #carfilzomib are science fictions in our country" Maja from Serbia
Who are the stakeholders we want to take action Myeloma Patients and their families General practitioner 1st Contact HCP The general Public
How do we reach them… The general Public Personal stories Photo exhibition (faces of myeloma) Social media (print and DVD for educ. Material) Billboards Campaigns Celebrities TV partnership Myeloma Patients and their families The general Public Actionable Advocacy Tele-mentoring In person training Online For 1st contact doctors as well as HEM/ONCs Clinical trials Measurement of QOL as patient reported outcomes Relapsed and Refractory myeloma care Secondary Cancer General practitioner 1st Contact doctor
What are some of the ways we can raise awareness? Collaboration Lift and shift opportunities (reuse) from partner organizations Lift and shift opportunities with each other Common global initiatives Pain, Neuropathy, Side effects, Lifestyles, Neutrition, …
If we can advocate for 2 things only IMWG guideline for cost and value in myeloma therapy Supplemented by GMAN opinion statement Personalized by each region and country International myeloma day!!