Session: Communitarian Approaches to Public Health Issues
Beyond Coverage: A Luck Egalitarian Argument for Making Orphan Drugs Affordable
Thursday, October 12, 2023
8:15 AM – 9:30 AM ET
Location: Galena (Fourth Floor)
‘Orphan drugs’ are drugs that are approved to treat rare diseases. Due to their smaller patient populations, orphan drugs cost more per patient. The question for those who believe there is a moral imperative to make healthcare widely accessible – and consequently affordable – is whether that obligation extends to making orphan drugs affordable. Covering orphan drugs would divert funds from medical goods and services that would likely produce a greater net benefit to more people. I argue not only that the obligation to make medications affordable rests largely on the people (and only partially on drug companies and payers) but also that healthcare resources should be distributed according to an egalitarian scheme, i.e., without the aim to maximize net utility. In this paper, I will show that luck egalitarianism, specifically, requires equitable access to treatment for patients with orphan diseases. That is, because a disease’s rarity has limited moral relevance to people’s right to healthcare access, and because rarity itself makes a patient worse off, we should continue to accept a higher cost-effectiveness threshold for covering orphan drugs. Moreover, it also follows that orphan drugs should be covered not just partially but rather to the extent that will make them affordable for patients. This framework thus produces a more robust but demanding obligation on society to make orphan drugs affordable, as it would require a greater commitment of people’s taxes and premiums to covering orphan drugs to a greater extent than current practice entails.