Method: We surveyed of a random sample of 551 Norwegian doctors and compared results to a similar survey of the Norwegian population. Respondents chose whether to prioritize treatment of patients with rare versus common diseases and then decided how to allocate funds between the two groups for each of two scenarios: (1) equal costs per person and (2) higher costs for the rare disease. In the second scenario respondents were randomized to treatment costs for the rare disease that were either 8 or 25 times higher than treating the common disease. Except for different prevalence, the diseases were described as identical. Outcomes for the allocation exercises were the mean share of funds allocated to the rare disease and the share of respondents dividing funds equally between the two groups. Respondents also indicated which allocation principle health authorities should use in setting priorities.
Result: Doctors’ responses differed significantly from those of the general public. For questions in which the rare disease was more costly to treat, a larger share of doctors (77.4%) than the general public (52.6%) prioritized the common disease group for treatment (c2: p < 0.001) while a smaller share (18.2% vs. 42.9%, c2: p < 0.001) expressed indifference. When dividing funds between the two patient groups, doctors allocated an average of 27.3% of funds to the rare disease group compared with 41.1% for the general population. Only 14.8% of doctors divided funds equally between the groups compared to 42.0% of the general public. (Mann-Whitney: p < 0.001).
Conclusion: There are significant differences in how doctors and the general population in Norway would prioritize treatment of rare diseases. This information could be useful for policy makers, particularly if the preferences elicited from the general public reflect choice aversion.