As the parent of two small children, this is the kind of article that haunts me—a child with an incurable disease, a photo of that child, hopeful, bald due to medical treatment. Now deceased. I’m tempted to skip stories like this, but then again if nobody had the stomach to hear about the situations which are hard to face, solutions to problems would never be reached.

The gist of the situation is that thirty years ago, Congress passed the Orphan Drug Act as a way to lure pharmaceutical companies to develop drugs for rare diseases that had been “orphaned” — abandoned or ignored because they were unprofitable. The hope was that drugmakers would break even or post modest profits.

The act paid off, with hundreds of new drugs. But over the years, its good intentions have been subverted by the pharmaceutical industry, which has increasingly found ways to exploit this once-obscure health-care niche, transforming it into a multibillion-dollar enterprise. Read more…