Rare Diseases and Distributive Justice in the Allocation of Medical Resources

Abstract

    Public funding for the treatment of costly rare diseases is often a matter of debate in bioethics and political philosophy. This paper discusses how the dominant distributive justice theories treat rare diseases. We examine the quality-adjusted life years (QALY) model and luck egalitarianism, because these are currently the most influential theories involving justice in the realm of healthcare. As a theory focusing on cost-effectiveness, the QALY model values the cost of achieving a certain level of health improvement through medical intervention. However, since the treatment costs of rare diseases are commonly very high, this type of evaluation is disadvantageous to patients with rare diseases. In addition, since the costs of medical treatments usually depend on the research activities of pharmaceutical companies, which are profit-seeking entities, the treatment costs of diseases with few patients are unlikely to go down. On the other hand, luck egalitarianism is a normative theory claiming that official funds should be provided for the treatment of the victims of brute luck, not of option luck. At first glance, the theory seems to be advantageous to rare disease patients. However, the hypothetical insurance market envisioned by Dworkin, the originator of luck egalitarianism, was designed to leave rare diseases out of its reach. In the final section of the paper, we point out the problematic premise shared by both the QALY model and luck egalitarianism―that of ableism. The measurement of quality of life is essential for QALY evaluation; however, the quality of life of disabled people is often unfairly underestimated. Moreover, the proponents of luck egalitarianism uncritically view disabilities as mere bad luck and misfortune, something to be prevented as much as possible. We need to break away from the ableist perspective of philosophical theories, pay attention to the needs of rare disease patients, and change the way medical research is conducted, which at present is largely led by pharmaceutical companies.