Professor Christian Perronne denounces, in a forum signed in the Obs by a hundred doctors and associations, the lack of consideration of patients and the disease.
” It’s urgent “. With more than a hundred doctors and several associations, Professor Christian Perronne, head of the infectious disease department at the Henri-Poincaré university hospital, signs this week a platform in the Obs. He denounces the lack of recognition of Lyme disease as a chronic disease. This tick-borne condition is growing, yet it is underdiagnosed and poorly managed, says specialist
This tick-borne disease is growing, yet it is underdiagnosed and poorly managed.
Lyme disease is an infection caused by bacteria carried by a tick that can pass it on when a bite occurs. It is estimated that around 27,000 people are affected each year in France. Despite this figure, patient associations have been fighting for years for this pathology to be better recognized and taken care of by the State. A patient (Matthias Lacoste) even recently started a hunger strike to challenge the public authorities. Actions that pay off.
The French representatives of Lyme participated on June 29 in a meeting at the Ministry of Health with political leaders. In the process, the Ministry of Health reaffirmed its commitment to full recognition of the pathology and the implementation of reinforced actions in favor of prevention, screening and treatment of patients. The plan will be presented to associations in September 2016.
During the interview given to Why, At the end of this meeting, Professor Christian Perronne affirmed that the announcements made by Marisol Touraine were a first step but still too timid towards the recognition of the disease.
Have you been waiting for this plan for a long time?
Prof. Christian Perronne : It was time ! But being an optimist, I would say that is a positive point. More exactly, I think this is a shy first step. However, we are moving more and more towards official recognition of chronic Lyme disease. Previously, our interviews with the Ministry of Health always resulted in a complete denial of the pathology.
What do you expect from this plan, which will be unveiled in September?
Prof. Christian Perronne : Apparently, there will be the announcement of concrete actions next September. In any case, to review the official recommendations of the High Authority of Health (HAS) on the treatment of advanced forms of the disease. On this subject, I appeal. It will be inconceivable that patient associations are not involved in this process. In particular the French Federation against Vector-Based Tick Diseases (FFMVT).
What is the priority in Lyme disease ?
Prof. Christian Perronne : The number one priority is to have reliable diagnostic tests tomorrow. Afterwards, we can study. Lyme disease is still often blamed for a lot of different infections that go undiagnosed. That can not continue. Worse, I regularly read scientific errors on these devices. Official government brochures, for example, claim that the current test detects 100% of Lyme disease in their joint form. However, this is totally false. And this is just one example, there are others. Communication around the disease should also be reviewed.
How did the sick react?
Prof. Christian Perronne : They want to believe it. But above all, they would like the persecutions against the liberal doctors who treat them to stop. Otherwise, patients will always be forced to waste their fortunes in seeking treatment abroad. Others unfortunately sometimes prefer suicide.
To put an end to this, the Health Insurance and the Order of Physicians must immediately stop with this attitude. Finally, we must ensure that these patients have access to the status of long-term illness (ALD). So that they have better support thanks to the treatments which would in this case be reimbursed at 100%. At present, the victims are in a “no man’s land”.
Is the government also announcing an effort for research?
Prof. Christian Perronne : Yes, and this is very important. There could be institutionalized financial support for research projects. The ideal would be to involve several hospital centers, with, in the long term, certified institutes, for both basic and clinical research. In addition, clinical study monitors would be needed for the administrative work of data collection and management. I hope that these announcements of projects will be accompanied by funding to recruit staff.
Find the program L’Invité santé with
Prof. Christian Perronne (Raymond-Poincaré hospital in Garches)
aired on May 12, 2016
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