Articlehybrid2010

Societal views on orphan drugs: cross sectional survey of Norwegians aged 40 to 67

Arna S. Desser · Dorte Gyrd‐Hansen · Jan Abel Olsen · Sverre Grepperud · Ivar Sønbø Kristiansen

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Pharmaceutical Economics and Policy Health Systems, Economic Evaluations, Quality of Life Economic and Environmental Valuation

Abstract

OBJECTIVE: To determine whether a general societal preference for prioritising treatment of rare diseases over common ones exists and could provide a justification for accepting higher cost effectiveness thresholds for orphan drugs. DESIGN: Cross sectional survey using a web based questionnaire. SETTING: Norway. PARTICIPANTS: Random sample of 1547 Norwegians aged 40-67. MAIN OUTCOME MEASURE: Choice between funding treatment for a rare disease versus a common disease and how funds should be allocated if it were not possible to treat all patients, for each of two scenarios: identical treatment costs per patient and higher costs for the rare disease. Respondents rated five statements concerning attitudes to equity on a five point Likert scale (5=completely agree). RESULTS: For the equal cost scenario, 11.2% (9.6% to 12.8%) of respondents favoured treating the rare disease, 24.9% (21.7% to 26.0%) the common disease, and 64.9% (62.6% to 67.3%) were indifferent. When the rare disease was four times more costly to treat, the results were, respectively, 7.4% (6.1% to 8.7%), 45.3% (42.8% to 47.8%), and 47.3% (44.8% to 49.8%). Rankings for attitude on a Likert scale indicated strong support for the statements "rare disease patients should have the right to treatment even if more expensive" (mean score 4.5, SD 0.86) and "resources should be used to provide the greatest possible health benefits" (3.9, 1.23). CONCLUSIONS: Despite strong general support for statements expressing a desire for equal treatment rights for patients with rare diseases, there was little evidence that a societal preference for rarity exists if treatment of patients with rare diseases is at the expense of treatment of those with common diseases.

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References

1981The Framing of Decisions and the Psychology of Choice 1985The Framing of Decisions and the Psychology of Choice 1992Choice under Conflict: The Dynamics of Deferred Decision 2007Assessing the economic challenges posed by orphan drugs 1995Maximizing health benefits vs egalitarianism: An Australian survey of health issues 2005Orphan drugs and the NHS: should we value rarity?1996Cost-Effectiveness Analysis in a Setting of Budget Constraints — Is It Equitable?2005Drugs for exceptionally rare diseases: do they deserve special status for funding?

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2014Orphan drugs policies: a suitable case for treatment 2017HTA programme response to the challenges of dealing with orphan medicinal products: Process evaluation in selected European countries 2020Establishing a reasonable price for an orphan drug 2015Can the EVIDEM Framework Tackle Issues Raised by Evaluating Treatments for Rare Diseases: Analysis of Issues and Policies, and Context-Specific Adaptation 2012Orphan Drugs for Rare Diseases

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