The average U.S. patient on an orphan drug last year relied on a $136,000 therapy, a figure that’s climbed 38 percent since 2010. A fraction of a teaspoon of Soliris [a drug by Alexion approved to treat a rare blood disorder called atypical hemolytic-uremic syndrome, or aHUS, and priced from $500,000 to $700,000 a year], administered in a single 35-minute treatment, costs more than $18,000, and patients might need 26 treatments a year for the rest of their lives. With this single drug accounting for almost all its revenue, Alexion has created enormous wealth out of an estimated 11,000 customers. It generated $3 billion in sales in 2016.


Having to rely for profits on a small number of customers who are each potentially worth millions of dollars causes side effects of its own. For years, the sales culture at Alexion was so pressure-packed that aggressive phone calls to doctors were among its milder transgressions. Ethical lines were routinely crossed, troubling many of its workers, according to interviews with more than 20 current and former employees and more than 2,000 pages of internal documents.


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