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.
The following arguments should be kept in mind while taking decisions. There should be a greater moral impulse to help patients when seen as individuals rather than as anonymous members of a group. Lifesaving orphan therapies and therapies that restore or maintain capacities central to functioning in society should be covered and those that do not achieve these health outcomes should not be covered. Opportunity costs are to be explicitly and transparently included in any coverage decision.