“When you’re sick, you don’t have the strength to fight”: suffering from Charcot’s disease, the Insurance refuses to renew his chair

Ten years ago, the life of François David, a Lotois living in Mauroux, changed. The latter is a mason. He has been there since he was 16, and was even self-employed. “I had work for a year,” he says, when everything had to stop after 31 years of practice. François suddenly suffers from cramps, he falls a lot, he has spasms in his legs, weakness in his arms. After two years of medical wandering, the verdict falls: François suffers from Charcot’s disease.

“Back then, you would fall out of the closet. Your body becomes a prison, my legs no longer work and my arms are very weak,” sighs the former mason. Very quickly, the latter is declared disabled. François is forced to move around in an electric wheelchair. And there are two types: an outdoor one, with big wheels and a big motor, and an indoor one, lighter and smaller, to move around the house. And the indoor chair is not too much: François sometimes fits very narrowly in the corridors of his house and between the door frames, forcing him to make many maneuvers. So it is difficult to imagine an outdoor chair entering the house.

In March 2019, François purchased an indoor electric chair. But over time, the device deteriorates. Batteries regularly fail, and many malfunctions are observed. Impossible for the former mason to continue using it. His attending physician therefore prescribed a chair replacement. In April 2024, François therefore approaches the CPAM du Lot to validate this renewal and obtain a reimbursement. A first request is refused. “To justify their refusal, they explain that François already has a versatile outdoor armchair,” explains Didier, François’ cousin.

“We don’t change chairs for pleasure”

But this refusal poses several problems. Health insurance claims that the multipurpose outdoor chair can work indoors. But for that, a suitable house would be needed. Which is not the case. “The house was built 30 years ago, we can’t redo everything,” describes the man who suffers from Charcot’s disease. Some adaptations have nevertheless been made: an external ramp to allow him to leave the house independently, the bathroom was redone a year ago…

Determined not to let this happen, François appealed this decision. “You don’t change your chair for fun, you change when the device is dead. I’m not asking for a chair because I’m fed up with white and I wanted an Alpine blue,” the man who suffers from Charcot’s disease smiles half-heartedly. He was refused again. On the grounds that the chair is only renewed every 5 years. “In accordance with the regulations, electric wheelchairs are covered by health insurance up to one every 5 years. Early renewal of the coverage is possible if the initial chair is out of order, deemed irreparable or unsuitable for the patient’s condition,” the CPAM du Lot explains to us. “There are a good five years between the two requests for an indoor chair… And the cost of repairing the chair is equivalent to the purchase price of a new one, which is not possible for us,” sighs François’ partner.

“For the sick, it’s a double punishment”

Disappointed by this decision, François had to turn to Le Bon Coin. Luckily, he found an indoor armchair that suited him. The price? €1,008. Out of his own pocket. Without this purchase, François would have had to stay stuck in bed all day. “I never thought they would refuse to change my armchair. It’s the basis for a disabled person. If I had to stay in bed because I didn’t have an armchair, it would have been over. That’s my fear. In the morning, when I get up, it’s difficult. The little I can still move, I have to keep working on it,” confides François.

And this is what grips the heart of this Lotois: the lack of consideration for sick and disabled people. In the ten years he has been ill, he has had to spend 20,000 euros out of his own pocket to equip himself and continue to live with dignity. To be able to get around and go out, François bought a second-hand TPMR vehicle, also found on Bon Coin. €13,500. “Fortunately, there is the MDPH (House for Disabled People – editor’s note) in Cahors which paid me €2,100. It’s not much but that’s already it, they are of precious help”, puts the Lotois into perspective . His outdoor chair, for example, cost him €21,000: €2,900 financed by social security, François €3,500 and the rest by MDPH. He therefore hopes that his chair will be taken care of and reimbursed. For its part, Health Insurance suggests that they turn to a personalized support system and contact an advisor from the CPAM health support mission.

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However, the former mason remains bitter: “When we are sick, we don’t have the strength to fight, yet we have to. We are tired, we don’t want to. They play on that.” He goes further: “for all patients this means suffering a double punishment: their illness, their disability, and no longer, the difficulty in obtaining decent financial assistance.”