Story of a patient: First steps with the Caisse Nationale de Santé (12)
Unfortunately, it has been discovered that I have Tarlov cysts throughout my spine, and this on both sides – which is even rarer.
The D10 height cyst was the one that caused me the biggest problem in years.
Life goes out slowly while living with a rare disease. Also settles the slow death of the compassion of the relatives.
We talk a lot about human rights, but we forget people with rare diseases.
With a rare pathology, patients are punished several times:
1- Many years before having a diagnosis
2- All these pains bring back in the end an incapacity for work.
3- And then we are condemned to advance the costs of 39,900 euros (without the cost of the flight) for his surgery. Fortunately, the doctor travels to Cyprus because the same operation in Dallas (USA) would have cost +/- 100.000 euros.
4- Then a shock – reimbursement of the CNS (national health service): 5.641 euros. This decision violates the principle of equal treatment.
I ask myself the question according to which criterion or with regard to which comparable operation the CNS has defined the amount of this refund.
The doctor’s competence is not to be compared with another operation because there is none. To this day, his technique is unique.
In addition, I have to go back again twice if I do not want to end up in a wheelchair.
Contacted by me, the CNS mediator advised me to contact a non-profit association; in case of lack of money, all I would have to do is go to the social security courts. Another CNS agent told me that I could still be happy to have paid for it myself.
Since when does the financial situation of a patient play a role in his pathology? Is healing just the attribute of the rich? Can patients with rare diseases not have the right to live, to be cared for, and to be supported all the way?
Next article “A rare disease or not rare – always remains a DISEASE”