09/06/2026
Alzheimer Europe publie une nouvelle prise de position appelant à un accès équitable et rapide au et au , les premiers traitements modificateurs de la maladie d' autorisés dans l'Union européenne.
Élaboré suite à une consultation des associations nationales membres, du Groupe de travail européen des personnes atteintes de démence ( ) et du Groupe de travail européen des aidants de personnes atteintes de démence ( ), ce document identifie cinq domaines de préoccupation et appelle à des actions concrètes de la part des gouvernements, des organismes d'évaluation des technologies de la santé (ETS), des fabricants et de la communauté scientifique :
- la prise en compte de la situation et le point de vue des malades et des aidants
- un diagnostic rapide et précis
- pouvoir prendre une décision éclairée et accompagnée concernant leur traitement, en concertation avec leurs médecins et leurs familles
-L’accès aux soins
-Les dispositifs d’accès encadré et les programmes pilotes, tels que ceux déjà mis en place pour le cancer et d’autres maladies graves
https://www.alzheimer-europe.org/policy/positions/alzheimer-europe-position-access-anti-amyloid-treatments-europe-0?fbclid=IwdGRjcASUd5xjbGNrBJR3i2V4dG4DYWVtAjExAHNydGMGYXBwX2lkDDM1MDY4NTUzMTcyOAABHmFp2cmGWwBr7golP4qapXa0XNgjkYVM606p2KYWJv23Dk5wPGzSq99--P_Z_aem__hI7zl_Txf4Imvg34EMIEw
Today, we publish a new position paper calling for equitable and timely access to and , the first disease-modifying therapies for disease authorised in the European Union.
Developed following consultation with national member associations, the European Working Group of People with Dementia and the European Dementia Carers Working Group , the paper sets out five areas of concern and calls for concrete action from governments, health technology assessment (HTA) bodies, manufacturers and the research community.
The five key concerns identified are:
● Meaningful benefit is shaped by individual circumstances and lived experience, and the significant societal cost of dementia, including the often-invisible burden on informal carers, is insufficiently captured in many assessment models. The perspectives of people living with Alzheimer's disease, their carers and the patient organisations that represent them must be genuinely and substantively incorporated in assessments from the outset.
● Every person with Alzheimer's disease deserves access to a timely and accurate diagnosis, independently of whether treatment is available or reimbursed. Diagnostic infrastructure gaps should not be used as a justification for withholding access to authorised therapies, and investment in diagnostic capacity is essential to prepare for future treatments.
● People living with Alzheimer's disease deserve the opportunity to make an informed, supported decision on treatment with their doctors and families, based on clear and balanced information about expected benefits, risks and uncertainties.
● The current absence of reimbursement across most of Europe is deepening inequity. Access is primarily determined by wealth and geography rather than clinical need, compounding disparities that extend beyond treatment to diagnosis, support and care.
● Managed access frameworks and pilot programmes, of the kind already established for cancer and other serious conditions, offer a practical and proportionate pathway to treatment while real-world evidence continues to develop.
https://bit.ly/AE_AntiAmyloidTreatmentAccess
