Radio programs examining the successes and controversies surrounding orphan drugs

The stories below are January 2017 articles and NPR radio programs about orphan drug issues that were written and published by Kaiser Health News (related to the Kaiser Family Foundation) and the National Public Radio (NPR) broadcast system. They are in-depth articles examining the successes and controversies surrounding orphan drugs and how they are affecting patients lives.

Click on the titles of stories you wish to read and/or listen to. Among those quoted are Abbey Meyers, retired congressman Henry Waxman, former FDA officials Marlene Haffner and Tim Cote, and many others who have been essential to the orphan drug world.


High Prices For Orphan Drugs Strain Families And Insurers

WBUR - ‎Jan 17, 2017‎

Luke Whitbeck, 2, sits on his mother's lap while the nurse prepares his treatment at a pediatric infusion center in Hawthorne, N.Y., in October 2016. (Heidi de Marco/Kaiser Health News). Before Luke Whitbeck began taking a $300,000-a-year drug, the ...


Drugs For Rare Diseases Have Become Uncommonly Rich Monopolies

NPR - ‎Jan 17, 2017‎

More than 30 years ago, Congress overwhelmingly passed a landmark health bill aimed at motivating pharmaceutical companies to develop new drugs for people whose rare diseases had been ignored. By the drugmakers' calculations, the markets for such ...


Drugmakers 'hijacked' the FDA's orphan system to score premium pricing on mass-market meds: report

FiercePharma - ‎Jan 17, 2017‎

About one-third of the orphan drug approvals the FDA has doled out since starting up the program have been for repurposed, large-market products or drugs with multiple orphan green lights. Share Facebook Twitter LinkedIn Email Print. There's no denying ...


FDA 101: What Does 'Orphan Drug Designation' Mean?

Yahoo Finance - ‎Jan 17, 2017‎

It has been more than three decades since the U.S. Congress passed a bill encouraging pharmaceutical companies to develop new drugs to treat rare diseases. According to NPR, President Ronald Reagan's Orphan Drug Act of 1983 resulted in more than ...


Drugmakers Manipulate Orphan Drug Rules To Create Prized Monopolies

Kaiser Health News - ‎Jan 17, 2017‎

This investigation examines the booming orphan drug business and how drugmakers have rushed into the marketplace with hundreds of drugs for rare diseases, helping patients while landing lucrative federal incentives and monopoly control for every drug ...