An agreement was reached between the Biogen laboratory and the French state that allows access to medicine for all concerned patients. Concerning the management of Spinraza®, the first innovative therapeutic medicine offered to patients with spinal muscular atrophy. This agreement gives access to medicine for all patients concerned by type 1,2 and 3 spinal muscular atrophy patients without burdening the finances of each hospital. The hospitals, in fact, will be entirely reimbursed for their costs.
This medicine obtained market authorization the 30th of May 2017 and was available in France with a temporary use authorization then as a post ATU device. From the first announcement of their award by Biogen, the AFM Telethon regretted this particularly high rewards claim, uncorrelated with the real development costs of the product, threatening access to all patients with the first therapy, particularly those affected by a type 3 spinal muscular atrophy. In fact, in the past months, this threat has significantly slowed down patient access to treatment. It required all the energy of the association, professionals, and families so that all patients that wished to be treated were treated in the context of a post ATU device and so that a reasonable agreement could be reached at the international level for the coverage of the treatment for all.
Therefore, the AFM telethon is excited today to have been heard by the public authorities and that this agreement responds to these demands, even if the association regrets that the overall conditions of the agreement remain confidential. The published award is at face value, not corresponding to the actual value of the collectivity. This lack of transparence is regrettable as it does not allow the sending of a strong signal to stop the current escalation of price claims for innovative medicines that are arriving today on the market. The AFM-Telethon is renewing its call to moderation and responsibility for industries concerned.