Top highlights from Day Two of the 12th Annual Global Myeloma Action (GMAN) Summit held in Stockholm, Sweden.
The International Myeloma Foundation’s (IMF) 2026 Global Myeloma Action Network Summit took place from June 5-7, 2026, in Stockholm, Sweden — bringing together myeloma patient organizations that represent over 40 countries. The summit facilitated the exchange of information, celebrated achievements, and coordinated efforts to advance the IMF GMAN’s global mission.
The Global Myeloma Action Network® (GMAN®) is a global coalition of myeloma patient organizations representing over 40 countries. GMAN works in collaboration with patients, caregivers, physicians/key opinion leaders, policymakers, industry partners, and other global stakeholders.
The meeting brought together organizations from every continent, including several first-time participants and newly established advocacy groups from Greece and the Philippines, creating a dynamic forum for sharing experiences, exchanging successful approaches, and building partnerships to address common challenges.
Here are some of the highlights from Day 2 of the GMAN Summit. (EDITOR’S NOTE: Topics of discussion and speakers’ views have been edited for conciseness and clarity.)
Addressing Challenges & Opportunities, and Redefining Cure in Myeloma
Film viewing: Project Cell
Day 2 kicked off with a film viewing of the documentary Project Cell, which captures a unique and highly relevant moment in cancer care — the transition into advanced therapies such as CAR-T.
The film follows Oscar Hedin, a myeloma patient and professional documentary filmmaker, during his CAR-T treatment at Karolinska. The session includes a short film, followed by a live conversation with Oscar.
Global landscape of myeloma: Challenges and opportunities
The session was moderated by IMF President & CEO Heather Cooper Ortner and IMF Chairperson of the Board Dr. S. Vincent Rajkumar.
Nature and biology of myeloma, a collaborative research community, and the need for equal access to effective treatments
Speaking to an international gathering of myeloma advocates, Dr. Rajkumar said the rapid pace of progress in multiple myeloma has been driven by three key factors: the biology of the disease, a highly collaborative research community, and close partnerships among researchers, patients, regulators, as well as industry and advocacy organizations, who have a shared commitment to improving patient outcomes.
However, he emphasized that these advances would have limited impact unless effective treatments become accessible and affordable worldwide.
Dr. Rajkumar said that myeloma has been particularly responsive to modern therapies, allowing the field to progress faster than many other cancers. Rather than attributing this to exceptional researchers alone, he said biology has played a major role.
He noted that approximately 20 new myeloma drugs have been approved over the past two decades, a pace made possible by extensive collaboration across the field. Researchers, clinicians, patients participating in clinical trials, pharmaceutical companies, nonprofit organizations such as the IMF, and regulatory agencies have worked toward a shared goal of improving patient outcomes rather than individual recognition.
"Our vision is to cure myeloma or to make people live a normal life as long as they can," Dr. Rajkumar said, adding that teamwork has been central to the field's success.
The greatest challenge: Widening disparities in access to new therapies
The discussion then shifted to one of the meeting's central themes: widening disparities in access to new therapies.
Dr. Rajkumar said that even in the U.S., where virtually all approved myeloma therapies are available, many eligible patients do not receive them because of systemic barriers.
He cited data suggesting that only about 20% of eligible patients receive CAR-T cell therapy or bispecific antibodies, while only 20–25% receive frontline quadruplet regimens despite their growing acceptance as standard treatment.
He attributed these gaps to high out-of-pocket costs, limited access to specialized treatment centers, travel burdens, and healthcare policies requiring hospitalization or treatment at designated centers. He stressed that drug costs account for only a fraction of overall expenses.
According to Dr. Rajkumar, these problems require government policy changes supported by advocacy organizations to improve affordability and access to specialized care.
Global access deterred by regulatory delays and pricing negotiations
On a global scale, Dr. Rajkumar said many countries face different challenges. Universal healthcare systems may ultimately provide broader patient access once therapies are approved, but delays in regulatory approval and prolonged pricing negotiations often postpone availability.
According to Dr. Rajkumar, health authorities must balance limited healthcare budgets across many diseases — making decision-making difficult on whether to fund expensive myeloma therapies or treatments over larger patient populations with other cancers.
He also suggested that U.S. drug-pricing policies influence global negotiations because manufacturers can offset lower international prices with higher U.S. revenues. He asserted that this dynamic could weaken the negotiating position of other countries seeking lower prices.
Defining a global minimum standard of myeloma care
Rather than focusing first on the newest and most expensive therapies, Dr. Rajkumar said advocacy efforts should prioritize ensuring universal access to a core group of treatments that have produced the greatest improvements in survival.
He identified bortezomib, lenalidomide, pomalidomide, carfilzomib, daratumumab, transplantation when appropriate, and risk-adapted maintenance as essential components of modern, evidence-based myeloma care.
He said that these therapies account for much of the increase in median survival (from roughly three years historically to approximately 12–15 years today) more so than newer treatments such as CAR-T therapies or the bispecific antibody, teclistamab.
In response, the meeting organizers announced plans to work with IMWG to develop a publication that defines a minimum global standard of clinical care for multiple myeloma.
The goal is to provide advocates worldwide with an evidence-based framework that supports discussions with regulators and health authorities on improving access to essential therapies.
Dr. Rajkumar called for a global minimum standard of care, broader access to established therapies, and simpler, less expensive clinical trials. He said these steps could dramatically improve outcomes for patients worldwide—even in countries where access to the newest treatments remains limited.
Q&A session with global patient advocates
During a Q&A session with global patient advocates, Dr. Rajkumar said a practical minimum standard for NDMM should include VRd (bortezomib, lenalidomide and dexamethasone), access to ASCT, and risk-adapted maintenance therapy—lenalidomide alone for standard-risk disease and bortezomib plus lenalidomide for high-risk disease.
Although quadruplet therapy with daratumumab plus VRd offers additional benefits, he said it should not be considered essential where resources are constrained. Referring to studies comparing daratumumab-VRd (D-VRd) with VRd, he noted that four-year overall survival was approximately 90% versus 91%, suggesting most patients do not lose meaningful benefit if daratumumab is reserved for first relapse.
“VRd frontline [as a] minimum plus ability to give transplant and at first relapse, have access to at least a few of the triplets,” he said.
He added that access at first relapse should ideally include triplet combinations using drugs such as daratumumab plus pomalidomide, carfilzomib, and dexamethasone (Dara-KPd). He cited studies from Canadian and Emory investigators showing median survival of approximately 13 years, achieved largely with bortezomib, cyclophosphamide and dexamethasone (VCd) or VRd as frontline therapy, demonstrating that excellent long-term outcomes are possible without routine upfront daratumumab.
The discussion repeatedly returned to the unequal availability of myeloma treatments around the world.
Patient advocates from countries such as the Philippines and across Southeast Europe described limited access to both innovative therapies and inexpensive generic medicines.
In the Philippines, advocates explained that government procurement currently covers only dexamethasone, while patients often rely on out-of-pocket payments, charitable assistance, or financial support from relatives abroad to obtain other treatments.
Advocates also described major price differences for generic drugs between neighboring countries. One example compared Bosnia and Croatia, where patients sometimes cross borders because generic bortezomib and pomalidomide are substantially more expensive despite expired patents.
Dr. Rajkumar said understanding why such disparities exist would be critical to making future recommendations actionable and invited advocates to share detailed information on local pricing and market barriers.
He welcomed a collaboration between the IMWG and GMAN to develop a globally accepted minimum standard of myeloma care and strengthen advocacy with governments, health ministries, and international organizations.
Expanding access to clinical trials emerged as another major priority. Although international Phase III studies are responsible for generating much of the evidence supporting drug approvals, the expert noted that individual participating countries often enroll only 5 to 10 patients in trials involving roughly 500 patients across 50 countries, limiting local access despite substantial international participation.
Dr. Rajkumar pointed out that clinical trials have become unnecessarily expensive because of increasing regulatory and documentation requirements. He emphasized the need to advocate for simplifying data collected in clinical trials.
To build research capacity, he encouraged investigators in emerging clinical trial centers to begin with practical investigator-led studies using approved therapies.
Examples included head-to-head comparisons such as VRd vs KRd, VRd vs DRd, and VRd vs VPd, as well as studies examining optimal maintenance duration (2,5, or 10 years) or different dosing schedules for teclistamab, such as every two weeks versus less frequent administration.
He said publishing these studies would demonstrate credibility and make institutions more attractive to industry-sponsored research.
Questions on sequencing newer immunotherapies were also addressed.
Dr. Rajkumar said existing evidence supporting BCMA-directed CAR T after prior BCMA-targeted bispecific therapy remains limited and largely comes from small studies rather than regulatory-quality evidence.
Current data suggest outcomes are roughly half as effective as CAR T given to BCMA-naïve patients, making reimbursement difficult to justify given the treatment cost.
He said stronger evidence showing durable benefit (e.g., a substantial proportion of patients remaining progression-free for 2 years) would likely be needed before regulators would support broader use. In the meantime, therapies targeting alternative antigens such as GPRC5D may represent a more promising strategy.
Redefining ‘cure’ in myeloma
The discussion also examined whether myeloma is now considered curable.
“Cure is very simple. You should eradicate the disease, stop the treatment, and the disease doesn't come back ever, ever again,” said Dr. Rajkumar.
He distinguished true cure from the proposed concept of "potential cure," which would describe patients who remain minimal residual disease (MRD)-negative for 5 years after stopping therapy.
Dr. Rajkumar emphasized that the definition remains hypothetical and could be disproven, if long-term follow-up demonstrates continued relapses.
Because cure requires treatment to stop, he welcomed ongoing trials evaluating fixed-duration therapy and MRD-guided treatment discontinuation. These include studies evaluating time-limited use of bispecific antibodies and other regimens designed to achieve durable remissions without lifelong therapy. He also noted that results from an important treatment discontinuation study are expected soon.
Questions about disease monitoring focused on whether blood-based testing could eventually replace bone marrow biopsies.
Dr. Rajkumar predicted that highly sensitive mass spectrometry performed on peripheral blood will become the preferred approach because it is easier, less invasive, and more practical for routine monitoring. At his own institution, he said sequencing-based MRD testing is performed in only a small minority of patients outside clinical trials, with most patients instead monitored using blood-based testing.
The session concluded with a discussion of screening and early intervention for precursor conditions.
Dr. Rajkumar advised against routine population screening for MGUS, until studies such as iStopMM demonstrate that screening improves survival.
He emphasized that only about 10% of people diagnosed with MGUS will ever develop myeloma or another related disorder, while the remaining 90% will never experience progression.
He strongly supported early treatment for high-risk SMM, but not for MGUS or all patients with smoldering disease. He noted that only about one-quarter to one-third of patients with SMM meet high-risk criteria and are most likely to benefit from intervention. Patients whose disease progresses over time to meet high-risk criteria should also become eligible for treatment.
Citing results from the AQUILA trial and studies of upfront daratumumab, he said early intervention delays progression to symptomatic myeloma, may improve overall survival, and postpones the need for prolonged multidrug therapy.
In the daratumumab study, approximately 20% of patients receiving early treatment required full myeloma therapy after three years compared with more than 40% of patients managed with observation alone, highlighting what he described as an important public health benefit.
Throughout the discussion, Dr. Rajkumar emphasized that improving access to proven therapies, overcoming barriers to affordable generic medicines, reducing the cost and complexity of clinical trials, and strengthening international collaboration could substantially improve outcomes for patients worldwide while broader access to the newest myeloma treatments continues to evolve.
Closing Remarks
Day 2 of the 12th Annual GMAN Summit was officially adjourned with key learnings and closing remarks made by Mira Armour of Mijelom CRO, and Hayley Beer of Myeloma Australia.
Participants reaffirmed GMAN's role in uniting myeloma advocates worldwide and assured their commitment to translating shared priorities into coordinated global action. Key outcomes include:
1. Creating a GMAN-IMWG working group. Establishing a joint working group between the Global Myeloma Action Network (GMAN) and the International Myeloma Working Group (IMWG) to develop a globally endorsed minimum standard of myeloma care. This can serve as a practical tool for advocates to influence national health authorities and improve access to essential treatments.
2. A unified commitment to action. Throughout the closing discussion, measurable progress was emphasized. Shared priorities include improving access and affordability, gathering stronger evidence on global disparities, and developing coordinated advocacy strategies based on data rather than anecdotal experience.
3. Strength through global collaboration. There is unique value in bringing together global advocates to share experiences, challenges, and successful approaches. Despite differences in healthcare systems, many recognized that countries face common barriers, particularly around access to treatments, affordability, and patient education.
4. Building a lasting global network. To strengthen collaboration beyond the summit, the creation of a GMAN WhatsApp group was suggested, to facilitate rapid communication and peer support among advocates. Plans were also made to further promote the GMAN resource toolkit to continue sharing best practices across countries.
5. Shared purpose and optimism. The meeting closed with reflections of gratitude for the openness, generosity, and collaborative spirit of the group. Participants were inspired by scientific advances, the opportunity to learn directly from leading experts, and the relationships built during the meeting. The discussions reinforced a shared commitment to improving outcomes and expanding equitable access to care for people living with multiple myeloma globally.
Looking forward to GMAN 2027
GMAN looks forward to welcoming the global myeloma community to the next in-person Global Myeloma Advocacy Summit in June 2027 in Barcelona, Spain.
