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Rare Diseases

An Evaluation of Canadian Societal Values and Views on Funding and coverage of Expensive Prescription Medications

At present, the Canadian publics’ values and priorities regarding the funding of high-cost medications and rare conditions is not well understood. Additionally, the values used in current funding decisions for high-cost medications are not publicly known; therefore, we do not know whether Canadian societal values are represented. We will undergo a survey of the Canadian public on their perceptions on funding and reimbursement of rare diseases. We will determine what factors and values Canadians feel should guide a reimbursement decision for an expensive drug for a rare disease, whether Canadians are willing to prioritize expensive medications given the opportunity costs associated with their funding, and also what their maximum willingness to pay is. Through generating empirical evidence on what the values and priorities of the public as a stakeholder are, we aim to determine whether rare conditions are an area of drug reimbursement for which value-based funding should be made, and whether there is rationale for them to be exempt from traditional cost-effectiveness thresholds. Secondarily, this information will be of value to decision-makers who should strive to represent society’s best interests.