This article is part of our special report Alzheimer’s disease tests EU readiness.
European Union countries are still lagging behind in tackling Alzheimer’s disease despite calls by the World Health Organisation for urgent action as cases in the European region are expected to double.
At the same time, the lack of proper infrastructure in national health systems across the bloc presents a challenge for the rollout of promising new therapies.
Alzheimer Europe, an NGO which represents dementia patients, estimates that in 2018, 7.8 million EU citizens lived with dementia, of whom two-thirds were women. Alzheimer’s disease (AD) makes up between 60 and 80% of these cases of dementia.
Jean Georges, Alzheimer Europe’s executive director, said these numbers have been increasing due to Europe’s ageing population, and are expected to double in future.
“Without a significant change in how AD and other types of dementia can be treated and prevented, we would expect the numbers of people with dementia to almost double by 2050 to 14.3 million. It should therefore be clear that urgent pan-European action is needed to support dementia research and care,” he told EURACTIV.
The upcoming drug
The US Food and Drug Administration approved last June Aduhelm (aducanumab) for the treatment of AD, targeting the early stages of the disease. Its authorisation has triggered strong reactions in the US, with divisions even within the FDA.
Critics point out its high cost, estimated at about €48,000 annually.
The drug has also been submitted for approval to the European Medicines Agency (EMA) and is under late-stage review.
However, even if this drug, or another innovative therapy, is approved, critics suggest that Europe’s health systems are not ready to take advantage of their potential.
According to an Alzheimer Europe survey of more than 1,400 carers in five European countries (Czech Republic, Finland, Italy, Netherlands, and Scotland), there are significant delays in diagnosing Alzheimer: It took on average 2.1 years to receive a diagnosis (ranging from 1.6 years in the Czech Republic and Italy to 2.5 years in Scotland).
For Georges, a lack of awareness by patients’ families, but also of health care professionals, the denial and the perceived stigma of the affected people, as well as infrastructure problems with long waiting times to access specialists or specialised diagnostics such as brain scans, are among the main barriers.
“With new treatments hopefully focusing on the earlier stages of AD (e.g. at the mild cognitive impairment or the mild dementia stage), these challenges will be further exacerbated,” stressed Georges.
The governments, he added, would need to invest in awareness campaigns, medical training of GPs and specialists, whilst also developing the specialist infrastructure necessary for people to receive a timely diagnosis and get access to new treatments.
Asked by EURACTIV if Europe would be ready to make use of aducanumab, a European Commission spokesperson replied that the executive is not in a position to comment on individual products while they are subject to a pending marketing authorisation application.
AD develops 20 years before symptoms
The European Federation of Pharmaceutical Industries and Associations (EFPIA) commented in an emailed response that health systems in most EU member states are not prepared for the introduction of disease-modifying medicines.
“Much more investment is required in diagnostic facilities and in treatment pathways and more trained staff will be required to diagnose, treat and monitor the progress of dementia patients,” EFPIA said, adding that special focus must be put on screening people for early cognitive impairment and dementia.
For the pharmaceutical industry, Europe should also invest significantly in raising awareness over the disease, which says is developing 20 years before symptoms.
“The public needs to be aware of this fact to identify symptoms as early as possible. Even healthcare professionals need training in order to identify AD at earlier stages”.
The pharma industry said strong leadership is needed to push AD as the next healthcare policy priority: “This should start at the European level and cascade down to national healthcare systems”.
The civil society and the industry call for the development of a European action plan similar to the Beating Cancer Plan to ensure that dementia becomes a priority in the EU4Health and Horizon Europe programmes.
Asked if the executive is considering pushing forward an EU-wide plan on AD, a European Commission spokesperson said the focus is on overall health promotion and disease prevention instead of having disease-specific strategies, combined with efforts to strengthen national health systems.
“The Commission is aware of the burden on health and well-being as a consequence of Alzheimer disease. It has adopted a comprehensive approach to address non-communicable diseases, including mental and neurological disorders,” the Commission spokesperson said.
Referring to the EU Pharmaceutical Strategy, the spokesperson said it recognises that “treatments for important diseases, for example, neurodegenerative diseases and paediatric cancers are still lacking”.
“This obviously includes Alzheimer disease. It is part of the strategy to reflect on a better pharmaceutical policy framework to stimulate innovation in areas of unmet needs.”
The official also said it was still premature to say if the EU4Health Work Programme 2022 would include AD explicitly, as there are ongoing discussions with member states.
“A positive opinion in the EU4Health programme committee is necessary for the adoption of the programme,” the EU official said, adding that the Commission is expected to adopt the work programme by the end of 2021.
[Edited by Zoran Radosavljevic]