Paris (AFP)
Lyme patients and their relatives are expected to demonstrate Wednesday in Paris to demand "concrete solutions" to the government, considered too wait-and-see on the recognition and management of this disease transmitted by ticks.
"It's not going fast enough, you have to be much more ambitious," said Bertrand Pasquet, president of the association ChroniLyme, which supports this "peaceful gathering" planned on the Esplanade des Invalides from 11:00.
The organizers of the event deplore the lack of funding for research on this disease, despite the promises made during the launch of Plan Lyme in 2016.
They also denounce "the systematic obstruction" of an organization of medical specialists, the Society of infectious pathology of French language (Spilf), which refuses any evolution of the official recommendations of screening and management of this complex pathology.
To unblock the situation, "we ask to be received at the Elysee," told AFP Nassera Frugier, at the origin of this "call for mobilization" under the slogan #EnsembleContreLyme.
Her initiative has received the support of the six major patient organizations, but it is a "non-associative label" gathering, she insists, while differences have emerged in recent months between patient organizations on action to be used and the priorities in the claims.
It is also supported by about thirty parliamentarians, including MPs André Chassaigne (PCF), François Rufin (LFI) and Annie Genevard (LR).
"Thousands of people are regularly injured, humiliated, can not afford treatment, hear us, it's really a call from the heart," claims Nassera Frugier, author of the testimonial book "Lyme, cancer of the soul ", published in 2016.
The group has drawn up a manifesto that "sums up in ten precise points the requirements of the sick".
This document calls for the government to "take full measure of the public health problem posed by Lyme disease" and "the end of the cacophony" on the official recommendations between the various health authorities.
It will be presented Wednesday morning to several deputies in the National Assembly and a delegation will visit early in the afternoon at the Ministry of Health, where will be held on the same day a new steering committee of the Lyme plan.
The movement claims to be able to participate in this committee, in addition to associations of patients already represented, and also wishes the presence of the French Society of Immunology and an expert of the Ministry of Budget for "the evaluation of the economic and social cost (...) the lack of care or the insufficient care of patients ".
Currently "we do not have the right people around the table", Judge Bertrand Pasquet.
? 2019 AFP