One might think of a painful grin, but it is indeed a smile that lights up his blue eyes. It is because, for Olivier Goy, each word spoken has become both a physical test and a plea for hope.
“The disease would like to gag me, but I want to transform fatality into a fight to prepare for the future”, he let go, this Wednesday, April 12, to applause, at the conclusion of the symposium organized by the Association for Research on Amyotrophic Lateral Sclerosis (ARSLA), better known as Charcot’s disease.
The most common rare disease
In December 2020, this successful entrepreneur learns that he is suffering from this incurable neurodegenerative pathology which leaves him only a few years of life. The most frequent of the rare diseases – 8,000 patients and 1,800 new cases per year – is also one of the most terrible since it results in a progressive paralysis of all the muscles which leads, most often, to death by suffocation within a short period, three to four years on average after diagnosis.
This is no doubt why ALS has become the disease most often highlighted in the end-of-life debate by supporters of a change in the law towards a “active assistance in dying”. This militant discourse is based on a few high-profile cases such as that of sports journalist Charles Biétry, who recently announced that he had already organized his “assisted suicide” in Swiss.
“I chose to live until the end”
A choice that Olivier Goy refuses to judge. “Everyone does what they can. Me, I chose to live until the end. And to use every minute to make things better,” he confides in The cross. “Bringing the Lines” To ensure better care for patients, this is also the task set by Dr. Valérie Goutines, general practitioner in Cahors and president of ARSLA, the leading association for funding research into the disease.
The symposium which brought together, on Wednesday April 12, the actors concerned – patients, doctors and researchers, ministries, health authorities, pharmaceutical laboratories – made it possible to measure the progress made in recent years, but also to point out all that remains to be done so that patients no longer feel left behind by society.
“This starts with earlier diagnosis, recalls Gilles Brabant, of the Rare Diseases Alliance. The current delay, a year and a half for the majority of patients, represents a loss of opportunity for patients whose life expectancy is already very short. » The second priority is to organize a better coordination of the course of care, in particular between the hospital and the city medicine, but also between the various interveners – medical, paramedical, social – so as to allow the patient to become “actor and not subject of his illness”as Dr. Goutines points out.
A race against death
This also requires better financial support to compensate for expenses related to the loss of autonomy. “Me, I am a privileged person, I can afford an electric wheelchair for several thousand euros when all the others have to wait months to be reimbursed for half”, says Olivier Goy indignantly. Finally, above all, there is a strong demand for French regulations to be further relaxed in order to encourage the development of new drugs or to allow access to innovative therapies that are not yet authorized in France.
So many expectations that will be taken into account in the 4th national rare disease plan being developed, we promise to the Ministry of Health. A plan whose flagship actions should be presented at the beginning of the summer to be financed via the next Social Security financing bill, in the fall. “All ALS patients and their families are in a race against death, emphasizes Valérie Goutines. We hear a lot about Charcot’s disease. Now, we must act to avoid situations of despair. »
Olivier Goy is already preparing for the promotional campaign forinvincible summerdocumentary by Stéphanie Pillonca, which he initiated. “An ode to life and love” the release of which is announced for May 31 throughout France. Proceeds will be donated to the Brain Institute, one of the world’s leading ALS research centers.