• GMAN member organizations who are recipients of the 2020 Susie Novis Durie (SND) Grants shared the outcomes of their projects:  
  • Austria’s Myelom Lymphom Hilfe Österreich presented “Fit despite cancer,” an online exercise program that supports quality of life through movement.  
  • Portugal’s Associção Portuguesa Contra a Leucemia designed a website tool for patients and their care partners for directing questions to healthcare professionals.  
  • Croatia’s Mijelom CRO launched a drive to make clinical trials more accessible for patients in South-Eastern Europe.  
  • Israel’s AMEN Association of Myeloma Patients created a program that supports Arabic myeloma patients in Israel in overcoming cultural and language barriers.  
• Recipients of the 2021 Susie Novis Durie Grants were announced: Myeloma Australia, Finland’s Suomen Syöpapotilaat, Norway’s Blodkreftforeningen, and Romania’s Myeloma Euronet. 
• Breakout sessions focused on starting and sustaining myeloma groups in new regions, as well as which GMAN working groups are needed.  
• IMF Vice President of Support Groups Robin Tuohy led a discussion on how to encourage people to remain committed to a support group even when they are in remission.  

• IMF Board Member and Professor of Medicine (University of Torino—Torino, Italy) Dr. Mario Boccadoro and IMF Chief Medical Officer Dr. Joseph Mikhael led a panel discussion on CAR T-cell therapy in myeloma, and on developing a strategy to overcome access and supply chain issues. The sessions finished with a review of new treatments for relapsed disease.  
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  Healthcare inequality became a constant topic of conversation throughout the summit. Issues on access to care, medications, and therapies as well as access to information and support were thoroughly discussed. Some of the salient points explored include: 
  • GMAN delegates shared experiences of myeloma therapies being approved in their countries but being denied to patients because of lack of alignment with payers.  
  • A call for all patients to have equal access to prescribed approved medications.  
  • A discussion ensued around the definition of “required drugs” and whether in some areas this term is being used to limit myeloma patients to only first-line therapies.  
  • A conversation on the role of pharmaceutical companies in providing information and support, and how this differs from country to country. Some countries no longer have representation from the pharmaceutical industry. This led to the suggestion of a regional approach that would allow patients to get information and support from other countries, as well as their own. 
  • An idea was developed for stronger collaboration with the World Health Organization (WHO) to mandate use of drugs post-launch, and deeper relationships with industry to drive information and cost discussions.  

These discussions and suggestions serve to illustrate how patients, care partners, and advocates are eager not only to identify problems but to bring solutions to the table. GMAN strives to bring “No Borders, No Barriers, No Limits” to life.