Insurance and altruism values of a novel treatment for hypophosphatasia: a stated preference survey in the United States

AIMS: To estimate the insurance and altruism values of a novel hypothetical treatment on survival gains for perinatal-/infantile-onset hypophosphatasia (HPP), a rare, severe, inherited disease, which-if untreated-leads to early mortality in children. METHODS: Residents of the United States aged 21-54 years from the general population participated in a web-based, cross-sectional, prospective, stated preference survey. The insurance value module included respondents planning to have children, whereas the altruism value module included respondents not planning to have children in the future. A multiple random staircase survey design was utilized to assess respondents' willingness to pay (WTP) for insurance coverage of the novel HPP treatment offering survival gains. RESULTS: = 254) were included in the insurance value and altruism value modules, respectively. Overall, 72.2% of the respondents were aged 30-49 years (insurance module: 72.4% and altruism module: 72.0%) and 52.8% were men (insurance module: 56.8% and altruism module: 48.8%). For generous coverage of the novel HPP treatment, the mean WTP was $10.35/month or $124.22/year as additional health insurance premiums for the insurance value module (insurance value makes 90.1% of the total treatment value). The mean WTP was $9.40/month or $112.85/year as taxes for the altruism value module. CONCLUSION: The high insurance and altruism values for the novel HPP treatment, which can significantly improve survival, suggest that health gains for children may be valued more highly than similar health gains for adults, especially in a rare disease context.