Lack of disease awareness, fragmented data, delayed diagnoses, and unequal treatment access are fuelling an overlooked public health crisis with wide economic and social costs. That was the key take-away from a recent event in the European Parliament focused on Autoimmune Disease. With millions affected and health systems under strain, the event demonstrated that these conditions provide a powerful test case for Europe’s commitment to coordinated action to help people live better and longer.
The event, Autoimmune Diseases in Focus: Tackling Unmet Medical Needs as a European Public Health Priority, co-sponsored by European Business Summits and argenx , followed on from the European Health Summit Roundtable on Longevity that took place late in 2024. It placed autoimmune diseases under the microscope. Guests heard that autoimmune diseases – despite the number of patients they affect – remain a largely invisible issue where delayed diagnosis, unequal access to care and the failure to capture and understand the full impact of these diseases is leading to poor outcomes for patients but also more broadly for society.
Part of the challenge is a low level of awareness. Autoimmune diseases are often poorly understood, frequently misdiagnosed, and in many cases underfunded. There are more than 100 autoimmune diseases, some of them being fairly prevalent, but many of them being relatively rare diseases, such as myasthenia gravis, chronic inflammatory demyelinating polyneuropathy (CIDP), lupus and many others. And while numbers for each individual disease may be relatively small, their combined impact is hugely significant.
“Between 5% and 10% of the global population is currently living with an autoimmune disease,, which often strike most aggressively during the prime years of life,” PD Dr. Jana Zschüntzsch, a Senior Consultant for Neurology at the University Medical Center Göttingen, explained. “In AD, our immune system – a sophisticated defence mechanism designed to protect us – suddenly mistakes our own body as an enemy, meaning the immune system attacks healthy cells, tissue and organs. In addition, specific autoimmune diseases like myasthenia gravis rarely occur in isolation, often presenting with comorbidities including other autoimmune conditions — further complicating medical care and research.”
That rising tide of need is why experts are urging action now, not in the future. And one of the key changes they would like to see is deeper cross-Europe collaboration to ensure better and more consistent access to care.
Lithuanian MEP Vytenis Andriukaitis, a former Commissioner for Health and Food Safety, argued that with an ageing population and healthcare systems under strain, it was now time for action.
“No single country can solve these problems alone,” MEP Andriukaitis told those attending the event. “It means that we need to think much more about shared competences and strengthen this mentality.”
His sentiment was echoed by other legislators in the room. Romanian MEP Maria Grapini also called for more cross-European collaboration.
“It’s necessary now for the European Commission to change its stance,” she said. “It’s no longer acceptable to say, ‘It’s not my problem, it’s a national problem.’ Well, it’s our problem - because we are together here.”
It’s necessary now for the European Commission to change its stance. It’s no longer acceptable to say, ‘It’s not my problem, it’s a national problem.’ It’s our problem - because we are together here
Maria Grapini MEP
MEP Ondřej Dostál reinforced the value of data sharing, including under current frameworks, pledging his personal support for action.
“I will be very happy to support any initiatives in the field of research, or the sharing of health and social data, ensuring innovation and patient access,” the Czechian MEP said. “Through this, we can truly be more competitive than other superpowers in the world.”
MEP Dostál’s plea highlighted the need for a step change in coordinating how data is shared between scientists and researchers who are developing new treatments. Several speakers expressed concern about both the lack of data and the current fragmentation of data and health infrastructure which is ultimately slowing the development and access to new treatments for autoimmune diseases.
“Imagine a world where we could easily identify patients at risk for an AD and provide them with a personalized treatment. Registries and biobanks could make it possible” said PD Dr. Zschüntzsch. “I think we need to strengthen the European Research Networks (ERNs) which already provide an elaborate infrastructure for registries and combine them with biobanks to overcome fragmentation of sources, privacy fears and lack of standardisation.”
This is far from just an academic discussion about data. Patients are paying a heavy price for these systemic gaps, experiencing delays and uneven access to treatments.
“The impact of the diagnosis delay is huge,” said Jean-Philippe Plançon, President of the European Patient Organization for Dysimmune and Inflammatory Neuropathies (EPODIN). “You cannot have early treatment without an early diagnosis.”
Plançon also expressed concern about the huge inequalities when it comes to access that those with autoimmune diseases face, with options varying sharply by country.
“Living in France, I am lucky because generally speaking I can have treatment access,” he said. “But some of my colleagues living in few EU countries are unable to have access. To me, that is unacceptable.”
It is not just patients and carers who are impacted by fragmented access to treatments. Professor Lieven Annemans, a health economist from Ghent University, explained that there is also a wider impact on the European economy.
“There is the burden to the patients and there is the burden to the health system and to society as a whole,” Professor Annemans explained. “If people cannot work, it's bad for the economy.”
Annemans challenged what he regards as a false dichotomy between health provision and fiscal responsibility.
“People think that health is a cost. But it's not true. It's an investment,” he said. “It’s still not realised enough by enough people that investing in health is investing in the economy.”
While the discussion highlighted many challenges in the current approach to autoimmune diseases, it also pointed to practical paths forward. Public funding for research and registries was a recurring theme as was the potential of new technologies such as AI.
For MEP Andriukaitis, however, the fundamental starting point needs to be a shift in mindset and structure. He issued a powerful call to action.
“Let’s keep in mind that we can build infrastructure, unite our forces, unite our scientists, our universities, our biotech and pharma industry, and our patient organisations,” he said. “We need coordination between multi-level governments. We need to build colliders, we need to build clusters, we need to form consortiums.”
As Europe prepares for a future shaped by ageing populations and workforce pressures, autoimmune diseases illustrate critical gaps in how the EU coordinates health data, research, funding, and care. There are wider lessons for policymakers too. It is time for health systems to shift from fragmented to unified, from reactive to preventive, and from national silos to coordinated European action.
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