1.
On June 24, 2026, the World Dementia Council (WDC) convened a virtual roundtable bringing together advocacy leaders from across Europe. The discussion focused on an important and timely issue: regulators have approved the first disease‐modifying treatments for Alzheimer's disease, but patients in much of Europe still cannot access them. The roundtable explored what is driving that gap and how advocates can address it. Chaired by Hilary Evans, CEO of Alzheimer's Research UK, the conversation drew on experiences from France, the UK, Sweden, and beyond.
2. INTRODUCTION
Lenny Shallcross, Executive Director of the World Dementia Council, opened by naming two questions the field needs to answer. The first was immediate: how do we get treatments to patients when payers are not covering them? The second was broader: how does advocacy need to change now that we are in an era of diagnostics and treatments? These questions are interrelated and the advocacy movements that helped get science to this point now need to think differently about what comes next in order to ensure equitable access.
3. NATIONAL PERSPECTIVE: FRANCE
Lorène Gilly, Head of Public Affairs at France Alzheimer, outlined the current situation in France and its implication for people living with dementia and their families. Between September 2025 and May 2026, the French National Authority for Health denied early access to both lecanemab and donanemab, concluding that neither provided sufficient clinical benefit and that delivering them would place an excessive burden on health systems. During the hearings, patient representatives were given only 5 minutes to present their views, thereby limiting awareness and inclusion of the lived experience perspective.
France has not reimbursed any Alzheimer's treatment since it dropped coverage of symptomatic therapies in 2018, and the window of eligibility for patients who could benefit today is narrowing every day. Ms. Gilly noted that the decisions also risk discouraging research investment and reducing the number of clinical trials conducted in France. France Alzheimer has engaging in advocacy efforts including letter writing, building coalitions, and pushing patient testimonials into the public conversation. The decision, she said, contradicts France's own National Neurodegenerative Diseases Strategy 2025–2030, which commits to making France a leader in Alzheimer's research and innovation.
4. NATIONAL PERSPECTIVE: UNITED KINGDOM
David Thomas, Head of Policy and Public Affairs at Alzheimer's Research UK, described the long road toward treatment access in the UK. Although lecanemab and donanemab were approved by the Medicines and Healthcare Products Regulatory Agency (MHRA) in 2024, market authorization does not necessarily equate to patient access. Neither lecanemab nor donanemab is reimbursed by the National Health Service (NHS), putting them out of reach for most people. Mr. Thomas laid out the barriers clearly: limited political bandwidth for dementia, payer concerns about cost and perceived benefit, a clinical community divided over what counts as meaningful benefit, a health system not ready to deliver these treatments at scale, and a Health Technology Assessment (HTA) process that is not well equipped to capture the value of these treatments.
Alzheimer's Research UK has responded by bringing lived experience directly into the HTA process, building an economic argument that links treatment access to growth and life sciences investment, and taking a more ambitious approach to political engagement. Mr. Thomas pointed to COVID‐19 as a model for what is possible when there is urgency and political investment. The organization has also identified diagnosis as a key barrier to treatment access and has been investing in building clinical relationships to address it.
5. NATIONAL PERSPECTIVE: SWEDEN
Linus Jönsson, Professor of Health Economics at the Karolinska Instituet in Stockholm, highlighted one of the central issues across most of Europe: drug pricing. There is a wide gap between the price expectations of these drugs and the perceived value they deliver. Economic evaluations consistently suggest that European health systems would accept a price in the range of 5000 to 10,000 euros per year for the new treatments. However, current list prices remain well above that threshold, and that gap has shaped how payers across Europe have approached reimbursement decisions, including in countries like Germany and France where cost‐effectiveness analysis is not the primary basis for initial decisions.
Despite these challenges, Dr. Jönsson expressed cautious optimism. Cost‐effectiveness is likely to improve over time through optimized dosing, new forms of administration, and new real‐world evidence. He anticipated that resubmissions drawing on that evidence would cause a shift in European markets over time, including in countries applying formal economic evaluation, and that these treatments will be reimbursed eventually.
6. DISCUSSION
Following the presentations, the full roundtable discussion covered several themes that cut across the experiences of various countries. A consistent message was that advocacy needs to become more political. Evidence‐based arguments are necessary but have not been sufficient to drive change. Decision‐makers need to feel that inaction around dementia has consequences, and that requires broader public awareness and engagement. Participants also noted that the coalition making this case needs to expand. The economic case for investing in dementia treatment, including productivity and social care impacts, has also not been made consistently.
On clinical meaningfulness, participants agreed that the framing needs to shift. People living with Alzheimer's disease want more time to travel, to attend a grandchild's graduation, to remain feeling like themselves for another year. That is a realistic expectation, and current HTA frameworks are not considering this. There was also a concern about ageism influencing the process, with decision‐makers assuming that extending quality time for older patients carries less value than it would for younger populations.
Real‐world evidence was identified as a critical and underutilized tool. Experience from the United States, Japan, China, and Israel shows that delivering these treatments is manageable and that health systems have not been as overwhelmed as initially feared. That evidence needs to be documented and shared more deliberately, particularly because system capacity is one of the most common objections from many European payers.
Participants also acknowledged the limits of the conversation itself. This was a discussion focused on wealthy European nations. The barriers to access in France or the UK are compounded in lower‐income countries, and any broader advocacy agenda will need to address that.
The roundtable closed with a shared sense of direction. Approved treatments exist for the first time. But approval without access is not enough, and the field cannot afford to let that gap persist.
To learn more about the WDC, please visit worlddementiacouncil.org or email Lenny Shallcross, Executive Director, at lenny.shallcross@worlddementiacouncil.com.