By Hayley Beer – Lead, Stakeholder Engagement and Advocacy

6 minute read

Reflecting on the International Myeloma Foundation’s 2026 Global Myeloma Action Network (GMAN) meeting in Stockholm in June, I can honestly say it was one of the most inspiring and impactful gatherings I have attended. 

As I looked around the room, I found myself thinking back to the origins of GMAN. I distinctly remember sitting around a table with just eight people at the American Society of Hematology (ASH) meeting in San Francisco in 2014, alongside Dr Brian Durie and Susie Novis Durie, discussing the vision for a new global advocacy network and debating what we should call it. More than a decade later, that vision has become a thriving international community with representation from every continent.  

What struck me most this year was the growing diversity of voices within the network. I particularly enjoyed connecting with Karen from the Philippines and seeing stronger representation from the Asia-Pacific region. These connections matter. Every country brings unique experiences, challenges, and solutions, and the opportunity to learn from one another is one of GMAN’s greatest strengths. 

The meeting began with a tribute to the late, great Dr Brian Durie. Dr Durie never missed a GMAN meeting, and his presence will be deeply missed by the global myeloma community. It was a fitting introduction to the opening presentation: an update from Dr Joseph Mikhael on the latest developments presented at the 2026 American Society of Clinical Oncology (ASCO) Annual Meeting. These sessions are always a highlight for me. Dr Mikhael has a remarkable ability to distil an enormous amount of complex information into the key issues of immediate relevance for advocates and patients. I was particularly pleased to see an Australian in vivo CAR T study (inMMyCAR), in his top three studies of the conference with our MSAG members, Professor Joy Ho, Professor Simon Harrison and Professor Andrew Spencer spearheading the groundbreaking research. 

Dr Mikhael’s talent for making difficult concepts understandable through memorable analogies was on full display once again. My favourites this year included describing the chemotherapy component of belantamab mafodotin as an “evil backpack” and likening the relationship between plasma cells and peripheral neuropathy to Taylor Swift and Travis Kelce. Noone understands it, but there’s clearly a connection between them. 

We then moved into a powerful panel discussion featuring personal stories from people affected by myeloma. Pernille from Denmark shared her experience of living with smouldering myeloma, while Jelena from Croatia spoke candidly about caring for her husband while raising their young children throughout his diagnosis and treatment experience. 

Their stories served as an important reminder that patients and care partners often need to become their own strongest advocates. Navigating myeloma can be overwhelming, and asking questions, seeking second opinions, and understanding treatment options are essential. This is where patient support organisations play a critical role. Providing credible, evidence-based information empowers people to advocate for themselves and make informed decisions about their care. 

The session also featured updates from Dr. Sæmundur Rögnvaldsson and Dr. Sigrún Þorsteinsdóttir from the Icelandic iStopMM study team, who shared exciting developments in myeloma precursor research. Their work continues to improve our understanding of monoclonal gammopathy of undetermined significance (MGUS), smouldering myeloma, and the potential for earlier intervention. 

Following a quick coffee break, we heard from recipients of the 2025 Susie Novis Durie Grants. Representatives from Armenia, Kenya, Poland, and Serbia shared updates on their innovative projects and the impact these initiatives are already having in their communities. It was equally exciting to celebrate the announcement of the 2026 grant recipients: Argentina, Ireland, Bosnia and Herzegovina, and the Philippines. Congratulations to all involved. 

The first session after lunch featured Neil Grubert, a global market access consultant, who explored key global access and policy trends and what advocates need to know in 2026. I found this session particularly insightful. 

As advocates, we often focus on the clinical evidence supporting new therapies, but access is influenced by many other factors, including health technology assessment processes, pricing policies, and government priorities. Neil provided valuable context on evolving global trends and offered insights into how policies such as President Trump’s proposed “Most Favoured Nation” approach could affect access to myeloma therapies worldwide. While many questions remain unanswered, having access to Neil’s expertise and experience in global health technology assessment was invaluable. 

The World Café session was, as always, a highlight of the meeting and the perfect conclusion to day one. This interactive format gives participants the opportunity to learn about impactful initiatives from around the world and exchange ideas in a collaborative setting. 

This year, we heard about Myeloma Canada’s efforts to achieve national standardisation of measurable residual disease (MRD) testing, Mijeloma CRO’s report on the fiscal impact of myeloma in Central and Eastern Europe, and the Philippines’ work to identify practical solutions to treatment access barriers. These conversations reinforced the importance of sharing knowledge and demonstrated how successful strategies in one region can inspire change elsewhere. 

Day two began with presentations from local advocates Lise-Lott Eriksson from Blood Cancer Forum and Oscar Hedin. Oscar, a filmmaker living with myeloma, shared excerpts from a documentary he is developing to highlight the realities of undergoing CAR T-cell therapy. The footage was deeply moving and offered a rare and powerful insight into the physical and emotional challenges of treatment. It was a poignant reminder that behind every clinical breakthrough and policy discussion are real people navigating the complexities of living with myeloma. 

Our final session featured Dr. Vincent Rajkumar from the International Myeloma Working Group (IMWG) in conversation with IMF Chief Executive Officer Heather Cooper Ortner. It was a privilege to hear Dr. Rajkumar’s perspective on the latest advances in myeloma care and to engage directly with one of the world’s leading experts. 

When asked what he believes has driven the extraordinary progress seen in myeloma over recent decades, Dr. Rajkumar reflected on the uniquely collaborative nature of the global myeloma community. The willingness of researchers, clinicians, advocates, industry partners, patients and carers to work together has accelerated innovation in ways few could have imagined. 

Perhaps the most significant outcome of this discussion was a shared commitment for GMAN to engage with the IMWG to develop a global consensus statement outlining the minimum standard of myeloma care that should be available in every jurisdiction. 

As more effective therapies become available as generics following patent expiry, there is an opportunity to raise the baseline standard of care worldwide. For years, advocates have grappled with the challenge of improving treatment access across countries with vastly different healthcare systems, resources, and starting points. Progress has often felt difficult because there has been no clear, universally accepted definition of what constitutes the minimum standard of care. 

By partnering with the internationally respected IMWG, GMAN members can equip themselves with a powerful advocacy tool, one that can support discussions with governments, regulators, and policymakers and help ensure that no patient receives less than the minimum acceptable standard of treatment. 

I would like to thank our industry partners for sharing updates on their patient advocacy initiatives. Their support makes meetings like this possible. 

Most importantly, thank you to Heather, Serdar, and the entire IMF team, particularly the Meetings Team, for bringing together advocates from around the world. Coordinating an event of this scale is no small task. 

The value of meeting in person cannot be overstated. Some of the most meaningful conversations happened during meal breaks, on bus rides, and while exploring the streets of Stockholm. New connections were forged, ideas were exchanged, and collaborations were born. 

Ultimately, those relationships will translate into stronger advocacy and better support for people living with myeloma worldwide.