The informal collective around neurodegenerative diseases which France Alzheimer is a part of together with other stakeholders, was received on 23 March in Matignon, by an advisor to the Prime Minister Elisabeth Borne. The main objective of this meeting was to alert the Prime Minister regarding the current political inertia around some of the issues at stake related to the fight against dementia and other neurodegenerative diseases such as Parkinson's disease and Multiple Sclerosis (MS), as there has been some inertia of the French ministries concerned, despite France Alzheimer alerting them of these issues on a regular basis.
Four million people are affected in France (people living with these diseases and their caregivers) and these pathologies represent the first cause of loss of autonomy! This is, therefore, a major public health issue which remains unanswered since the expiry of the French Neurodegenerative Diseases Roadmap 2021-2022, which despite its existence had neither started nor been funded. This silence, therefore, effectively dates back to the end of the French Neurodegenerative Diseases Plan 2014-2019 and the evaluation of this plan was already disappointing.
Elisabeth Borne’s advisor listened to France Alzheimer and the other stakeholders at the meeting, without reassuring them. This was to avoid conceding the fact that it is necessary "to enhance a dynamic into these specific questions", as he also reminded them that a national consultation on ageing is in progress and stated that this should "normally" make it possible to identify targeted measures. This answer brings France Alzheimer and the others in the collective back to their greatest fear: the dilution of their specific demands to fight against neurodegenerative diseases into the global responses that the French Government is trying to provide to people with loss of autonomy in general. The advisor's response is clearly not up to the expectations of the stakeholders, regarding the needs of the families they represent and to the issues related to the evolution of these pathologies, which are constantly increasing. This will meet the specific needs of people living with dementia in particular nor those of their caregivers, nor will it anticipate the increasing number of people affected or the arrival of new therapeutic innovations.
Following the meeting, the informal collective decided to react by publishing a series of tweets, for the attention of the main French ministers concerned, among whom are François Braun, Minister of Health and Prevention and Jean-Christophe Combe, Minister of Solidarity, Autonomy and People living with disabilities. These tweets completed a first lobbying action that was launched a few weeks ago and addressed to French MPs a proposed "Question to the Government", encompassing all of these observations and clearly asking the Government what its decisions would be, concerning:
• a dedicated National Plan to meet the issues at stake, co-constructed with the stakeholders with a real concern for health democracy?
• the allocation of funding consistent with the needs in the field and the ambitions of the various measures of this Plan, thus testifying to a mobilisation at least as strong as for the 2008-2012 Alzheimer's Plan, which served as international example?
• the continuous implementation of rigorous monitoring and evaluation of the actions implemented?
• the appointment of an inter-ministerial delegate to lead this plan and ensure its coordination with the various ministries involved in the subject, including the Ministry of Research?
The Government must answer these public questions and almost 15 MPs, from across all political groups, carried out the proposal. France Alzheimer will keep us and our readers updated, in due course, on the response.
