Question 11842 — pharmacy and medicines

Summary

Mr. Jean-Paul Dufrègne draws the attention of the Minister of Solidarity and Health to the conditions for the management of Wilson's disease and the threat weighing on the resources allocated to its coordinating center, the CRMR Wilson. I was recently contacted by a member of my constituency who wanted to testify about her patient journey and the crucial role of the CRMR Wilson reference center at the hospital. Lariboisière to make the correct diagnosis and coordinate the therapeutic protocol. This reference center is the only one on French territory. It was labeled from the first rare disease plan in 2005 and relabelled in 2017. Through its expertise, it has made it possible to better understand the disease to better manage it. Today, the budgets of this coordinating center are about to be cut in half, which will lead to a reduction of staff, the elimination of medical shifts and positions of physiotherapist, speech therapist, nurse and clinical research assistant. Certain screening, awareness-raising or training actions risk stopping due to lack of resources, which caregivers and patients refuse to accept. At the same time, this person is also alarmed by the increase in recent years in the price of Trientine, an essential drug. to patient survival. In France, there are effective treatments provided they are taken early and throughout life. When you suffer from a rare disease, being able to treat yourself is fortunate, but at a time when accounting logic applies to medical care, caregivers and patients are worried about the strategy of the only laboratory that markets Trientine to increase its price. In 2016, the association Bernard Pépin for Wilson's disease noted that in the space of three years, the price of Trientine had increased from 9.28 euros to 43.21 euros per capsule. When a patient must take 3 to 4 capsules per day, the annual impact of such an increase is considerable on the health budget. If this increase continues, will social security be able to continue to reimburse this drug at the current rate, namely 100%? He him asks what measures it intends to take to, on the one hand, not reduce the means necessary for the coordinating center to carry out its essential missions and, on the other hand, to regulate the price of Trientine in order to provide patients with the guarantees of being able to continue to access their treatment.

Machine translation from French. The official text remains authoritative.

Timeline

No timeline events have been ingested for this record yet.

Votes

No vote records are attached yet.

Versions

No version snapshots stored. Document URLs remain at the source.

Documents

No documents linked.

Sponsors

• Jean-Paul Dufrègne · auteur

Related records

No cross-record relationships stored yet.