Orphan drugs, highly specialized treatments for very small groups of patients, present great opportunities and challenges for modern health care systems.They come with a high price, and if health insurances do not reimburse them, they are not accessible to most patients. However, orphan drugs often do not meet reimbursement criteria due to low cost-effectiveness and lack of clinical evidence. Nevertheless, many orphan drugs get exceptions from these criteria and are reimbursed anyway. Yet, the more orphan drugs are authorized, the less their reimbursement can be based on exceptions, since this would require allocating a substantial portion of the healthcare budget to a small part of the population. Because orphan drug reimbursement is an ethical dilemma without a clear-cut solution, many authors call for public debates to legitimately solve this dilemma.
This project aims to investigate this phenomenon from an ethical and societal perspective. A systematic review of reason will be applied to the scientific literature to identify and quantify moral reasons used in scientific discussions. A newspaper content analysis will provide insights into the public debates of Switzerland, Germany, and the United Kingdom.