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n a move fraught with bitter overtones, the parents of twin girls who have a rare and fatal genetic disorder filed a lawsuit claiming a rare-disease drug accelerator and a drug maker misappropriated confidential business plans and medical research that was shared as part of a deal to find a treatment for the affliction.
The lawsuit was filed by Christine and Hugh Hempel, whose persistence in trying to find a salve for Niemann-Pick disease Type C is an example of the Byzantine challenges facing families that encounter rare diseases. Now, though, their efforts, which have been extensively chronicled, have detoured to a federal court because they claim precious data was misappropriated by companies that breached an agreement to work together to fight the disease.
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What’s needed is not Right to Try but Right to Drugs. A restoration of the traditional American right.
On first reading, it would seem the concluding lines – that Sucampo is being purchased by Mallinkrodt – would seem to be another match truly ‘made in hell.’ Likes,it would seem, do attract but of course, this is only on first reading.