Advocacy Groups, Doctors Question Rising Prices of Rare Disease Treatments – Fragile X News Today

Half a year has gone by since disgraced pharma executive Martin Shkreli was sentenced to seven years in federal prison for securities and wire fraud while heading San Diego-based Retrophin.

As founder and CEO of another company (then known as Turing Pharmaceuticals), in late 2015 Shkreli bought the rights to the off-patent medication Daraprim (pyrimethamine),which treats rare parasitic infections in babies and HIV/AIDS patients, and jacked up its price by more than 5,000 percent — from $13.50 to $750 a pill.

The brazen move earned Shkreli the wrath of millions of Americans, and put a sinister face on the issue of rapidly escalating prescription drug prices.

While the example of Daraprim is extreme, it’s no exaggeration that the skyrocketing costs of medications — especially therapies that treat rare diseases — are infuriating patients and the advocacy groups that represent them.

“We are deeply concerned about rising drug prices,” said Ron

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