Reference Labs Provide Patient Test Information to Rare Drug Manufacturer

A recent outstanding article inBloomberg by Ben Elgin and Caroline Chen detailed how Alexion Pharmaceutical developed a drug calledSoliris to treatparoxysmal nocturnal hemoglobinuria andatypical hemolytic uremic syndrome (aHUS) (see:When the Patient Is a Gold Mine: The Trouble With Rare-Disease Drugs). The cost for this drug is astronomical but there are not many patients requiring treatment. Company reps therefore closely keep of track patients with the diseases. There is also a history of reps aggressively marketing the drug. Unfortunately,"partner labs" seem to have played a role in this tracking process. Below is an excerpt from the article with reference to these partner labs:[Alexion] reps were instructed to urge doctors to send the tests to preferred “partner labs,” according to several former employees and internal documents. Unbeknown to patients and many of the doctors, several of these preferred labs have agreements with Alexion to provide it with a copy of the test results. These are “blinded” to remove the patient’s name, so they don’t run afoul of medical privacy laws. But in some cases the lab provides everything else: a patient ’s age, gender, and ZIP code, the hospital and doctor ordering the test, and a summary of the results. For Alexion sales reps, this gave a map to the doorsteps of otherwise hard-to-find patients. When a result for PNH [paroxysmal nocturnal he...
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