Last week, I attended a conference hosted by EFPIA in Brussels. The presentations were well delivered, the panels insightful, and the conversations meaningful. And yet I left with a sense of restlessness. The congress focused on the latest developments in research and treatments and what we might expect in the years to come. From a scientific perspective, there is reason for hope. Yet for patients with pancreatic cancer or glioblastoma, the outlook remains devastating. We urgently need more and better research into these neglected cancers.

What truly made me restless, was the discussion around access: how—and when—patients can benefit from new treatments. The disparity across Europe is staggering. In Germany, patients often gain access to new medicines shortly after EMA approval. In the Netherlands, it takes more than 500 days due to bureaucratic hurdles and long price negotiations. In Romania, it can take as long as 900 days. These delays are not just numbers. They translate into real lives lost. Let’s be clear: governments are responsible for many preventable patient deaths when they delay access to approved medicines. And in doing so, they ignore the hidden costs of delayed access i.e. the cost of human suffering and the cost of life itself. What was most troubling at the conference was seeing government representatives and regulators who appeared entirely detached from the consequences of their decisions. Their responses were technical, procedural—a “system answer” that focused only on how they work. There was no sense of urgency. No empathy. As patient advocates, we hold them accountable.

Yet the solution doesn’t need to be complicated. We could allow new treatments to become available immediately after EMA approval, while simultaneously beginning the Health Technology Assessment and pricing discussions. We could use Real World Data and Evidence to inform final pricing based on how medicines perform in daily clinical practice. Patients do not want medicines without real value—regulators must remove them from the market.

A promising step forward would be to implement joint EU assessments, rather than duplicating the same process across all 27 member states. Additionally, it is crucial that we harmonise health regulations across the EU. Currently, significant differences exist between countries, creating further barriers to timely care. Harmonisation is what the European Union was built for—free movement of people, capital, and services. We’ve succeeded before: We created the Euro, simplified cross-border financial transactions, are discussing a common European defence and are even treating Ukrainian patients across Europe—with reimbursement systems in place. So why not tackle the disparities that currently define access to life-saving treatment? Harmonisation would democratise healthcare, enabling patients to be treated where the best care is available—and be reimbursed for it. It can be done. We just need the will. And we need to remember who we are doing this for.

Because patients can’t wait.

Peter Kapitein
Patient Advocate Inspire2Live