Article in: Association française contre les myopathies (AFM) Blog (3/10/11)
Health authorities (FDA, EMEA, national agencies, etc.) have the obligation to ensure our health and safety from new drugs or treatments, but sometimes look like they know very little about our disease, in this case, in France are blocking a compassionate use due a the very remote possibility of an side effect that can appears in old age, unfortunately, few patients will reach if there is no effective treatment, and can not test it.
It is very sad, french patients which participated in the Dr. Isabelle Husson and Pierre Rustin Pioglitazone clinical trial, when they finish the two years clinical trial, they can continue with the Pioglitazone as compassionate use, now, the authorities ban this option, although as some patiens explain, they feel that get improvements. The reason, a very little possibility to develop a side effec, prostate cancer, a possibility that unfortunately is not logical for FA patiens, due to the typical disease life expectancy.