Orphan diseases are perhaps the most cruel of illnesses. Frequently life threatening, they afflict only a very small percentage of the world's populations, thereby discouraging research and making any drugs that are developed prohibitively expensive. Are pharmaceutical companies that do develop treatments merely getting fair return on their investment, or are they in fact extorting governments through manipulative emotional pressures as they assist families in publicizing their plight in bids to get government approval?
These questions and others are raised in a documentary shown on The National the other night. The drug in question, Solaris, costs over $600 thousand per year to save the life of one person.
As you will see, parents and other loved ones are put into untenable positions, making them easy pawns for what some would say are unfair pharmaceutical practices. That being said, I would do exactly what they are doing to save someone close to me.
You decide the ethics here: