[T]he drug's maker, Insmed, lost a patent infringement lawsuit to a biotechnology firm that was already selling a drug for short stature that had similar properties. Iplex , however, was thought to be more potent for treating A.L.S. Insmed agreed to pull its drug off the market. Only the Italian Health Ministry, which had begun to distribute the drug to A.L.S. patients under a compassionate use program, could continue to buy it. Kathy dashed off a letter to the F.D.A.... But the agency could not weigh in until Insmed agreed to make the drug available. And Insmed's hands were tied by the settlement agreement.
Before lashing out at the drug companies involved, or the F.D.A. for standing in the way of experimental trials, make sure you read the whole article. In the end, an agreement between drug companies, and a reversal of course by the F.D.A., allowed Joshua to start treatment with Iplex as a "compassionate use" exception."