France Alzheimer, the Vaincre Alzheimer Foundation, the Alzheimer Research Foundation, the Federation of Memory Consultations ask Europe not to close the door to immunotherapies, in a poignant forum:
“Words fail, dates get confused, recent memories fade before the name is pronounced “Alzheimer’s disease”. Images resonate confusedly in our collective unconscious: Alzheimer’s disease is the second pathology most feared by the French after cancer and before HIV (1).
As present as this disease is in our lives, in our fears, in our everyday language, Alzheimer’s disease remains little known, neglected from public health priorities and the political agenda. However, we are at a pivotal moment in the fight against this disease. The first immunotherapies are arriving, research is being stimulated, and the structuring of the Alzheimer’s ecosystem is strengthening. Finally, the hope of people living with Alzheimer’s disease and their families is reborn after decades of failure in laboratories to identify a curative therapeutic solution, and the delisting of only symptomatic treatments available in pharmacies. And what do we remember? That Europe is preparing to close the door to the only recent scientific progress that we have known against this pathology, immunotherapies, capable of slowing the progression of the disease at an early stage (approximately 30% reduction in cognitive decline after 18 months of treatment); unlike the rest of the world.
With or without Europe, History is now being written
This is why we, representatives of the Alzheimer’s community, a collective bringing together associations, foundations and health professionals, are sounding the alarm: Europe cannot remain at a standstill when the whole world begins the shift towards innovation. We owe it to sick people, to our families, to caregivers, to ourselves who, perhaps later, will be directly confronted with it. We are calling for action for people living with Alzheimer’s disease in Europe, with the same opportunities as those enjoyed by patients, for example, in the United States, the United Kingdom or even Japan.
Let’s be clear: these first immunotherapies do not constitute the universal remedy. The risks of side effects exist and are well known to us, in particular possible edema or cerebral bleeding. We even take them very seriously and are keen to offer rigorous supervision of prescriptions, administration and monitoring. Furthermore, our ambition must not be limited to slowing the progression of Alzheimer’s disease, as these first molecules do incompletely. Our ambition must be to cure Alzheimer’s disease. But how can we claim to reach the top of the stairs if we refuse to take the first step? And while we fight to win this fight, how can we justify depriving people living with Alzheimer’s disease at an early stage of several months of preserved independent life? We are talking about 300,000 people (2)without forgetting their suffering families and entourage, who also need support and hope.
Let us remain actors through our choices
The position expressed by the CMHP (Committee for Medicinal Products for Human Use), the European Medicines Agency, last July goes against innovation in Alzheimer’s disease. A heavy decision which occurs in an already complex environment: average diagnostic wandering of two years which places families in anguish, dereimbursement of symptomatic treatments which nevertheless produce effects, erratic financing of research as well as of the care system, insufficient consideration of non-drug treatments whose impacts are nevertheless visible… Are we prepared to wait any longer, even if it means sacrificing opportunities for patients and, even more seriously, the right to self-determination?
And yet, what we see in the patients who come to consult us, in the people who enter the doors of our associations and foundations, is certainly a lot of distress, a lot of suffering, but they are also people who are moving. through courage, who still have so much to live when they have access to appropriate care and support. These are stories of life and resilience, testimonies of increased love between caregivers and those being helped. And these lives, all of our lives perhaps tomorrow, in all their diversity in the face of the ordeal, we are firmly mobilized to help them. Mobilized since always, and from today, united to be mobilized more than ever.
The time has come to take up this challenge collectively and to be ready to quickly welcome innovations in Alzheimer’s disease by guaranteeing a path of care and support for patients.
We, representatives of the Alzheimer’s community, are committed to mobilizing with one voice to work alongside public authorities and authorities so that no patient suffering from Alzheimer’s disease in France and in Europe suffers from ‘a waste of luck!’
France Alzheimer, Vaincre Alzheimer Foundation, Alzheimer Research Foundation, Federation of Memory Consultations
1) IPSOS survey – Alzheimer’s: the 2nd most feared disease among French people, 2017
2) N. Villain et al., Revue Neurologie 2022 https://pubmed.ncbi.nlm.nih.gov/36336488/
