PORTRAIT – For 10 years, Gérard Raymond has the ambition to represent the 4 million diabetes patients in France. At the head of the French Association of Diabetics (AFD), he has placed the patient at the center of his care. Pourquoidocteur paints the portrait of this man, who forged a second life with the strength of his wrist.
Gérard Raymond died at the age of 34. It is he himself who says it when he is now 66 years old. It must be said that the most famous diabetic in France had two lives. The first started in 1949 and took place in Graulhet (Tarn). Made of money, friends, parties, in short the perfect career of a notable of the province to whom rugby, and a lot of work, had earned the respect of his peers.
Before lightning strikes him. The disease is called diabetes. His family life and his professional career are turned upside down. But after “this death”, this tenacious man knows the resurrection. Another exciting life opens up in Paris. Thanks to his fight in favor of diabetics, man has rebuilt himself, he has even made a place for himself in the debates on the place of patients in the French health system. At the head of the Association Française des Diabétiques (AFD) which has 160,000 active members, Gérard Raymond is now one of those who matter when it comes to diabetes in France. Moreover, it has the ambition to represent 4 million patients.
“Take revenge on my body”
For Gérard Raymond, everything changes in his thirties, an interminable flu that finally ends with a diagnosis: type 1 diabetes, the bon vivant then takes the paths of a monastic life. It is first in sport that he takes refuge. Finished his 85 kilos, he will become slender and marathon runner. “I wanted to take revenge against this body which had betrayed me”, he confides.
After 6 weeks of hospitalization and 6 months of sick leave, his company offers him … a closet. “When you come back after such a long absence, you are quickly told that this is the end of responsibilities. See the little desk with only a chair at the back in the corner? Well this is for you ”. Proud, this southerner, recognizable by his southern accent, does not let himself down. Despite “difficult” times, he wants to exist again, to find meaning in this new life.
A reconstruction thanks to the association
So, he throws himself a year after the discovery of his disease in the association. Body lost. First with the association Sport and diabetes health, “directed by doctors,” he says. Then very quickly, he created a more egalitarian structure, Diasport was born in 1998 in Haute-Garonne.
But the management of diabetes cannot be reduced to encouraging patients to play sports, Gérard Raymond very quickly understands. In order to go further in this fight, he decides at the age of 50 to put a definitive end to his career as a “lame” technical salesman because of his illness. Hyperactive, he therefore launches full-time into the association. In order to have the user’s place in the health system recognized at the national level, he joined AFD in 1998, where he climbed all levels.
Member of the board of directors, then of the national office, he has chaired the association since 2006. A career that leads him to professionalize his fight. “I took courses in communication, law, but above all, courses on the pathology of diabetes,” says Gérard Raymond. But in order to succeed in this endeavor, decision-makers must be convinced: “I also had to build a network, by increasing the number of breakfasts, think tanks and conferences. I was everywhere and I tried to speak with relevant questions, ”he continues. A winning approach says Christian Saout, Deputy Secretary General of the CISS (1).
Getting patients into business
According to him, Gérard Raymond has advanced the work of health democracy. “He is very familiar with diabetes. He initiated a powerful transformation of his association. Patients on AFD’s Board of Directors and doctors on a scientific council. Patients in business are all we can expect in the associative world, ”thinks Christian Saout. This rebalancing of the forces present within patient associations, Gérard Raymond assumes. He even claims the empowerment of patients.
Gérard Raymond, President of AFD: ” With the emergence of health democracy, a transfer of power between diabetologists and patients has been triggered within AFD.… “
Even today, this putsch leaves traces. With his concept of “expert patient”, Gérard Raymond has offended more than one. More than a doctor, of course. Among them, the eminent diabetologist André Grimaldi, who despite the respect he says he has towards the man does not at all share his vision of the care of the sick. “We have a deep disagreement on the concept of the ‘expert patient’. By offering training, validation with receipts and glues and finally professionalization, it creates confusion, ”insists this Professor of diabetes at the Pitié-Salpêtrière Hospital (Paris).
Since 2008, AFD has however trained nearly 200 of them. Concretely, they lead meeting groups between patients and conduct face-to-face meetings in order to facilitate the expression and sharing of experiences for each. Their mission is also to offer quality support. Functions and a notion that remain to be specified according to Professor Grimaldi.
Prof. André Grimaldi, diabetologist at the Pitié Salpêtrière Hospital (Paris): ” The expert patient, I still don’t know what it is. Should patients participate in care, for example? In this case I say no. “
(1) The CISS is a body that brings together 42 associations campaigning for the rights of patients and users.
Gérard Raymond: the patient at the heart of his fightPortrait of the president of the French Association of Diabetics -> bit.ly/1Vbn361
Posted by Why actor on Saturday 13 February 2016
Conquering institutions
But this first success was not enough, Gérard Raymond continued on his way. “The patient must weigh in the highest health authorities. The best placed to evaluate a health project remains the patient, ”he often argues. Thus, he is now a member of the Health Insurance Council under the CISS, but also a member of committees within the Haute Autorité de Santé (HAS), which issues recommendations on medical practices. Loud in mouth, his frank and direct attitude nevertheless seems hardly compatible with the hushed lounges of the Ministry of Health or other institutions.
The recently resigned president of the HAS, Jean-Luc Harousseau, for his part keeps very good memories of his meetings with Gérard Raymond. “I heard him each time defend the patient at the center of his care. We were regularly on the same wavelength. Among patient representatives, he is undoubtedly one of the most sought after. He has adapted very well and always finds the right tone or the right word, ”adds Jean-Luc Harousseau. But for those close to him, Gérard Raymond thrives in action. Thanks to this fighting spirit, he won some great victories. He first cites the reimbursement of the insulin pump by the public authorities. “We can be proud of it, we went from 5,000 patients who benefited from it, to 50,000 in ten years”.
Gerard Raymond : ” Before the reimbursement of the insulin pump, there were only a few dozen patients in a few departments who had it.… “
E-health as a third life
As the next project, Gérard Raymond would like to devote himself to digital: “We are now focused on new devices, the continuous glucose meter, applications, how tomorrow this support will be done, we have to be present” , he insists.
Perhaps a third life as an e-patient. No regrets when he looks in the rearview mirror. “Despite difficult times, his last fifteen years have been very rich for him”. “I made extraordinary trips and meetings, I went to the ministries, I even had the honor of speaking at the National Assembly. I was not programmed for all of this ”. But man is aware of the distance traveled: “We had to go and win it, we have nothing for nothing”. Perhaps a lesson in life for the patients around him.
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