Ethics in the service of the rare disease patient: Application of the thought of John Rawls and Paul Ramsey toward the increased availability of orphan drugs
AbstractPersons with rare diseases are frequently unable to obtain suitable pharmacologic treatment. Pharmaceutical companies are not apt to develop compounds for which there is a very small commercial market. Further, drugs for rare diseases are scrutinized by the Food and Drug Administration in the same manner as those for more common diseases--a contingency which, due to the enormous cost of drug research, further discourages profit-driven pharmaceutical companies from developing compounds for rare diseases.
John Rawls and Paul Ramsey offer insight into the situation and remedy of the plight of the rare disease patient. Rawls, with his notion of the basic structure of society, offers a framework in which justice dictates that the background institutions of this basic structure be constantly criticized and changed. Ramsey's thought serves the issue with his notion of agape or covenant-care--a concept which calls for the treatment of patients as suffering individuals