2. Armenia Hungary Iceland Serbia Portugal Denmark Spain Poland US

3. WE DON’T WANT TO RAISE AWARNESS
AWARNESS that leads to ACTION
SO WHAT?

4. 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

5. 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

6. 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

7. Who are the stakeholders we want to take action
Myeloma Patients and their families
General practitioner
1st Contact HCP
The general Public

8. 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

9. 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, …

10. 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!!