Question 1914 — diseases

Summary

Ms. Marie Mesmeur questions the Minister of Health and Access to Care about the serious difficulties encountered by patients with endometriosis in accessing long-term condition (ALD) status and thus benefiting from appropriate care. Endometriosis is a chronic pathology which affects approximately one in ten women in France and whose impacts on the health, quality of life and work capacity of patients are often heavy and disabling. In addition to chronic pain, endometriosis often leads to complications such as infertility, digestive and urinary problems and severe fatigue. These symptoms frequently require medical and sometimes surgical treatments, with significant costs for patients. However, despite the seriousness and chronicity of this disease, it is not recognized as an ALD 30, the list of which is fixed by decree. It can only be covered by ALD 31, known as “off-list” for which the procedures remain complex and unevenly applied. Many patients are refused this treatment, due to lack of clear criteria and systematic recognition of endometriosis in the context of ALD. Consequently, out of the 1.5 to 2.5 million patients, only 15,000 managed to obtain this status. In addition, once ALD has been granted, patients often have to redo the administrative procedures to prove, three years later, that their condition still requires this care. However, endometriosis is a chronic and progressive pathology that does not disappear. This requirement constitutes an additional obstacle and exhaustion for patients, already hard hit by the disease. Furthermore, in cases the most critical, ALD is sometimes refused, which calls into question the sick leave necessary for patients to manage pain attacks and the effects of the disease. The MP recalls that the Government has made endometriosis a national cause by launching a national control plan in May 2024. She therefore asks him if the Government plans to recognize endometriosis by decree as an ALD 30, in order to put an end to the arbitrariness of patients' procedures and grant them a protective status, guaranteeing the continuity and fairness of the treatment of this debilitating disease.

Machine translation from French. The official text remains authoritative.

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