Question 4269 — health

Summary

Mr. Mohamed Laqhila draws the attention of the Minister of Solidarity and Health to a written question published in the official journal on December 25, 2007 by the deputy Mr. Richard Mallié and which concerned an orphan disease, cystinuria-lysinuria. Ten years later and despite the response provided by the minister at the time, the situation seems to have stagnated or even deteriorated: the dosage of cystine in 24-hour urine is still outside the nomenclature and always remains the full responsibility of the patient (around 70 euros per analysis); patients are still refused recognition of their pathology as a long-term condition depending on their department of residence; potassium citrate, for the alkalinization of urinary pH, which until now was 100% covered in the context of a compounded preparation (in the absence of an equivalent therapeutic specialty) is now defunded, leaving patients to pay alone around 70 euros per month, due to the possibility of proceeding with a temporary authorization for use of potassium citrate in a different galenic formulation from the United States (Urocit-K), only accessible in hospital pharmacies delivering the treatment month by month, leading to poor patient compliance in the face of the complexity of access treatment (600 euros per month reimbursed in full); the PH paper is still not reimbursed by health insurance and is not available in pharmacies (apart from a model with a scale which is not adapted to the pathology). It costs around forty euros to obtain a 7 meter roll from a laboratory equipment supplier or go through a German pharmacy on the internet to obtain notebooks 100 tests for less than ten euros; travel to consult a specialist on this rare pathology is not covered by health insurance, as is access to information days which are filmed in order to allow online access which does not have the same impact at the educational level; acadione, marketed by the Sanofi laboratory, is regularly out of stock and currently unavailable. This treatment is used only for certain patients for whom an import authorization with the ANSM has been implemented, not without difficulty. He therefore asks her what measures she intends to take to meet patients' expectations and to better manage cystinuria.

Machine translation from French. The official text remains authoritative.

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