This article is part of our special report Alzheimer’s disease tests EU readiness.
Although associations and scientists are pleased that France has taken up the issue of Alzheimer’s with several consecutive plans, they regret that the momentum has since been lost.
“We had a head start thanks to the 2008-2012 plan, which our European counterparts envied us. Today we are stagnating,” said Benoit Durand, deputy director of the France Alzheimer organisation.
Launched under the presidency of Nicolas Sarkozy, after the fight against the disease was declared a “great national cause” of year 2007, the plan put on the table €1.6 billion over 5 years, including €200 million for research with the creation of a foundation of scientific cooperation – now the Alzheimer’s Foundation.
There are more than 1.1 million people with Alzheimer’s disease or related disorders in France today – and that number could rise to 2,240,000 by 2050 according to Alzheimer Europe.
Another plan was released in 2014 and proposed to encompass all neurodegenerative diseases (NDD) – including Alzheimer’s, Parkinson’s or multiple sclerosis. Like the previous strategy, this plan proposed a comprehensive approach to the challenges posed by the disease.
The latest arrival, the 2021-2022 neurodegenerative disease roadmap, seeks to extend measures “for which incompletion or the need for ownership require continued efforts”. It also seeks to initiate the Aging and Autonomy reform, which has been postponed several times since 2019, and which should address the needs of people suffering from loss of autonomy.
“There is absolutely no funding to support research,” said Maï Panchal, scientific director at the Fondation Vaincre Alzheimer. “We are not lagging behind, but we are stagnating,” she told EURACTIV.
Panchal explained that calls for specific Alzheimer’s projects, namely those carried out by the French National Research Agency (ANR), have become rarer as national plans have followed one another.
“A researcher at INSERN [National Institute of Health and Medical Research], CNRS [National Center for Scientific Research], or in public laboratories, is paid by the state, but if there are no associations or foundations like us, they can’t do anything,” Panchal emphasised, pointing out that it is organisations like hers that “give money to buy the equipment, to pay for a thesis student, to pay for a young researcher to work on the subject”.
“Associations and foundations are the biggest funders of Alzheimer’s research,” Benoit Durand from France Alzheimer confirmed to EURACTIV.
“It is absolutely necessary to invest in research. Unfortunately, we feel that this is not the current priority,” Panchal noted.
Funding more research is becoming more crucial as Alzheimer’s disease is “a textbook case of scientific misjudgement,” according to Catherine Malaplate, a researcher specialising in the early stages of the disease and its diagnosis.
“For a very long time, we relied on a hypothesis – that the disease was due to the accumulation of amyloid plaques in the brain – which was wrong, with pharmaceutical companies focusing on a target that was not the right one,” she told EURACTIV.
“We still need to put more investment in basic research today to be perfectly sure that we are looking in the right place”, she added.
The hospital biologist also called for a rethink on how to approach Alzheimer’s research: “We may forget that this is a disease that affects older people and we tend to test drugs on young animals. From a young mouse to an elderly man, there are many differences,” she noted.
Treatments at a dead end
Although “diagnosis has made enormous progress” thanks to biomarkers in particular, investing more in research is essential, Maï Panchal said.
“One person in two is not diagnosed”, observed Benoit Durand. “We still have an under-diagnosis, which is not specific to France, because these are very complex diseases,” added Catherine Malaplate.
“Once a neuron has died, it is difficult to go back. Hence the interest of early diagnosis,” stressed the researcher, while treatments are at a “dead end”.
Until May 2018, four substances used in the treatment of the disease were still covered by social security: donepezil, memantine, rivastigmine and galantamine.
But after an official opinion from the French High Authority for Health (HAS) in 2016, which noted a lack of clinical relevance, the Ministry of Health decided not to reimburse these drugs anymore. The reinstatement of these drugs to the list of reimbursable products is “not planned”, the Ministry of Health told EURACTIV.
This decision was not well received by some associations. While Benoit Durand acknowledged the variable effectiveness among the four drugs concerned, he regretted that the government had “forgotten the effectiveness that there could be on certain related diseases, including Lewy body disease,” noting that “when it is delisted, the prices are no longer the same.”
Even in the absence of effective drug treatments, the earlier a patient is managed, the more caregivers can try to stabilise their condition, and their autonomy. “In the mild stage, there is a lot to be done. In the severe stage of the disease, the main thing is to respect the patient’s dignity,” said Panchal.
Today, if clinical examination is facilitated by science, diagnostic can still take some time, particularly at the early stage of the disease.
“General practitioners are definitely on the front line in the detection of the disease, but remain very reluctant to establish an early diagnosis,” explained the scientific director of the Alzheimer’s foundation, specifying that they “want to avoid errors, the stigmatisation of the patients by society and the appearance of depression at the announcement of the diagnosis”.
“It is not so much the fault of general practitioners. They are reluctant, of course, but above all they don’t have the time to learn about this disease,” she added.
Benoit Durand confirmed this “lack of information from general practitioners”. That’s why, in 2018, the organisation he heads, France Alzheimer, collaborated with the College of General Medicine to develop training on this subject, and make a guide available to doctors.
But that is not enough. “The problem is also the medical desertification and the lack of doctors or neurologists in some places” that can lead to periods between “a year and a year and a half” before obtaining a definitive diagnosis.
[Edited by Frédéric Simon]