Hundreds of thousands of dollars are spent per patient per year on extremely expensive medications called 'orphan drugs', which are for rare chronic and life-threatening conditions. This money could provide greater overall health benefit if it is spread out among many other patients. How do insurers justify spending these huge amounts of money?
These decisions highlight the tension that can arise in health care between doing the most good possible with scarce health care resources and the desire to assist identifiable individuals regardless of cost.
Since the passage of the Orphan Drug Act of 1983, the number of orphan drugs has dramatically increased. There should be an ethical framework to guide coverage and reimbursement decisions for expensive orphan drugs.