Transcript Yelak Presentation at the GMAN meeting in Copenhagen

International Myeloma Foundation
Armenia Hungary Iceland
Serbia
International Myeloma Foundation
Portugal Denmark Spain
Poland
US
WE DON’T WANT TO RAISE AWARNESS
AWARNESS that leads to ACTION
SO WHAT?
International Myeloma Foundation
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
International Myeloma Foundation
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
International Myeloma Foundation
What are the needs of the patients
Global need to increase access to drugs
Novel therapies like #carfilzomib
are science fictions in our country"
Maja from Serbia
• 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
International Myeloma Foundation
Who are the stakeholders we want to take
action
Myeloma Patients and their families
General practitioner
1st Contact HCP
International Myeloma Foundation
The general Public
How do we reach them…
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Myeloma Patients
and their families
Actionable
Advocacy
The general
Public
General
practitioner
1st Contact doctor
International Myeloma Foundation
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Personal stories
Photo exhibition (faces of myeloma)
Social media (print and DVD for educ. Material)
Billboards
Campaigns
Celebrities
TV partnership
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
What are some of the ways we can raise
awareness?
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Collaboration
• Lift and shift opportunities (reuse) from partner organizations
• Lift and shift opportunities with each other
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Common global initiatives
• Pain, Neuropathy, Side effects, Lifestyles, Neutrition, …
International Myeloma Foundation
If we can advocate for
2 things only
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IMWG guideline for cost and value in myeloma therapy
• Supplemented by GMAN opinion statement
• Personalized by each region and country
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International myeloma day!!
International Myeloma Foundation