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The Global Myeloma Action Network (GMAN) Summit

A summary report from the 2022 GMAN annual meeting which took place in-person from May 20-22 in Milan, Italy.

 

Founded in 2013 by the International Myeloma Foundation, the Global Myeloma Action Network (GMAN) is a group of myeloma patient organizations from around the world who bring multiple myeloma advocacy leaders together and who share best practices to address mutual areas of concern of the global myeloma community.

GMAN’s global mission is to improve the lives of myeloma patients, raise myeloma awareness, enhance the capabilities of patient advocacy groups, build the capacity of local myeloma organizations, and increase worldwide access to medicine and treatment.

Yelak Biru presenting PowerPoint slides at the 2022 GMAN Annual Summit.
Yelak Biru presenting at the 2022 GMAN Annual Summit

This year’s annual GMAN Summit was held in person from May 20-22, with over 30 representatives of international organizations from 30 countries serving the global myeloma community in attendance.

IMF Patient, President & CEO Yelak Biru opened the GMAN Annual Summit with a warm welcome and shared his goal of leading the IMF in its mission to improve lives and find a cure for myeloma using the model of Capacity Building, Awareness, and Improving Access.

Additionally, Yelak outlined the modern definition of resilience and the six domains that help advance the mission in finding a cure for myeloma—giving patients and their care partners a framework for optimal balance.

Serdar Erdoğan presents at the 2022 GMAN Summit
Serdar Erdoğan presents at the 2022 GMAN Annual Summit

IMF Chairman of the Board and Chief Scientific Officer Dr. Brian G.M. Durie spoke about the new era of myeloma therapy—a presentation that was eagerly anticipated and greatly appreciated.

Progress in myeloma research has truly been dramatic, made possible thanks to the commitment of individuals who have joined clinical trials and undergone experimental therapies to provide the data that supports expanding knowledge and understanding of myeloma.  

Yelak expressed that myeloma patients are currently surviving far beyond expectations today because we stand on the shoulders of those who gave of themselves to make this possible.

At the closing of the summit, Yelak joined IMF Director of GMAN, Europe & Middle East Patient Programs Serdar Erdoğan in thanking the GMAN delegates for their engagement, collaboration, and passion for accomplishing GMAN’s collective mission.

Highlights of the 2022 GMAN Summit include: 
Doctors clapping at 2022 GMAN Summit
  • 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.  
  • Doctors in conference room at 2022 GMAN Summit
    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.  

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