Question 8241 — diseases

Summary

Mr. Léo Walter alerts the Minister of Health and Prevention on the implementation of the “neurodegenerative diseases plan” (MND plan) 2014-2019 and the roadmap that follows it for the years 2021-2024. The assessment of this MND plan highlighted the insufficiency of the achievements with regard to the needs of people affected by these pathologies on a daily basis: a new 2021-2022 roadmap was therefore officially launched in June 2021 by Mr. Olivier Véran, then Minister of Solidarity and Health. In fact, it has never been implemented or financed, with a few exceptions due to renewed annual funding. The enriched version of this roadmap, supposed to be implemented for 2023-2024, required significant urgent consultation work, but was never validated by the minister. While the MND roadmap is expiring on December 31, 2022, Mr. MP joins patient and family associations, foundations and learned societies who are warning of the consequences of current political inertia with regard to this major public health issue. Indeed, neurodegenerative diseases affect nearly 4 million fellow citizens (sick people and caregivers) and constitute, today in France, the leading cause of loss of autonomy. This number will only increase, with obvious health, social and economic consequences, given the current unmet needs in terms of care, support, accessibility to suitable structures, etc. The difficulties are numerous: diagnostic wandering, difficulties in accessing care, lack of care, insufficient therapeutic monitoring, disruption of the care pathway, isolation of sick people, lack of support for caregivers, impoverishment of the family unit, poorly adapted systems, difficult to understand inclusion policy, shortage of resources for research... Today, the French people concerned are worried to see that the subject of taking MND into account is, failing that, dangerously diluted in much broader reforms or strategies ("aging well", "carers", modernization of the health system...). These are reforms which, although they are essential, do not allow the specificity of a medical, medico-social and societal problem to be taken into account, which is nevertheless very unique and which requires adapted measures. Indeed, how can a policy in favor of aging well or “Old Age” ignore the primary cause of loss of autonomy? Diseases neurodegenerative diseases require a societal response and determined commitment from all stakeholders. These are serious, incurable and particularly disabling diseases, which must be fought forcefully, in the same way as cancers or even cardiovascular diseases. It is urgent to support the millions of French people concerned with dignity, with the necessary political responsibility. Faced with these findings, he asks the measures that the Government intends to take concerning: the implementation of a national plan dedicated to meeting the challenges, co-constructed with stakeholders with a real concern for health democracy; the allocation of allocations consistent with the needs on the ground and the ambitions carried by the various measures of the MND plan, thus testifying to a mobilization at least as strong as for the plan Alzheimer’s from 2008-2012, which served as an international example; the ongoing implementation of rigorous management and evaluation of the actions implemented as part of this plan; the appointment of an interministerial delegate to lead this plan and ensure its coordination with the various ministries involved in the subject, including the Ministry of Research.

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