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Rare diseases in healthcare priority setting: should rarity matter?
  1. Andreas Albertsen
  1. Department of Political Science, School of Business and Social Sciences, Aarhus University, Aarhus, Denmark
  1. Correspondence to Andreas Albertsen, School of Business and Social Sciences: Department of Political Science, Aarhus University, 8000 Aarhus, Denmark; aba{at}ps.au.dk

Abstract

Rare diseases pose a particular priority setting problem. The UK gives rare diseases special priority in healthcare priority setting. Effectively, the National Health Service is willing to pay much more to gain a quality-adjusted life-year related to a very rare disease than one related to a more common condition. But should rare diseases receive priority in the allocation of scarce healthcare resources? This article develops and evaluates four arguments in favour of such a priority. These pertain to public values, luck egalitarian distributive justice the epistemic difficulties of obtaining knowledge about rare diseases and the incentives created by a higher willingness to pay. The first is at odds with our knowledge regarding popular opinion. The three other arguments may provide a reason to fund rare diseases generously. However, they are either overinclusive because they would also justify funding for many non-rare diseases or underinclusive in the sense of justifying priority for only some rare diseases. The arguments thus fail to provide a justification that tracks rareness as such.

  • ethics
  • health care for specific diseases/groups
  • health economics
  • philosophical ethics
  • allocation of health care resources

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Footnotes

  • Presented at This paper was presented at the Danish Society for Philosophy Conference in Odense, 2020, and at the Measuring Health: Ethical Perspectives Workshop at Aarhus University, 2020.

  • Contributors AA is the sole author of this work.

  • Funding The work on this article has been funded by the Danish Research Council (grant number: 9037-00007B).

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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