Great article last two paragraphs point out exactly what has happened to Sarepta after prosensa's failed phase III. The best line in the article: " “leveling the playing field” for competing companies by slowing down the company in the lead "
Just goes to show that government is run by people and people are susceptible to fear-based pressure more than anything else. If DMD suddenly became infectious things would happen fast.
Our curse is the slowness, the almost imperceptible progression of DMD. Just like healthy people avoid the subject of death, so do regulators avoid innovative therapies in DMD despite the benefit /risk statement made by the community.
As someone who believes government has an important and vital role to play its very hard not to just blame the faceless bureaucracy.
But it's just people and we must strive to find other ways of motivating them to act.