Biotech Values

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New York Times on ALS and iplex


'Kathy’s boyfriend accompanied her to Insmed’s headquarters in Richmond, Va., offering to raise several million dollars to underwrite a compassionate use program for Iplex with A.L.S. patients. But the couple came away with a new understanding: F.D.A. regulations, they were told, prohibit any company from profiting on compassionate use. Even if Insmed could wriggle free of restrictions in the patent agreement, there was little financial incentive for it to invest in making the drug solely for compassionate use by A.L.S. patients.'


EPILOGUE: In April, Joshua signaled that he felt he was swallowing better, and to Joy and Kathy his voice seemed stronger. But on Easter Sunday, he was rushed to the
hospital with pneumonia and is still on a ventilator. He continues to take Iplex every day.



http://www.nytimes.com/2009/05/17/health/policy/17untested.html?_r=2&hpw