WHAT DRIVES PUBLIC PREFERENCE FOR RARE DRUGS COVERAGE IN CHINA? INSIGHTS FROM A MULTI-CENTER DISCRETE CHOICE EXPERIMENT
Author(s)
yanan wu, Ph.D, Jingdan Chen, Ph.D, Yue Zhang, MS, Shunping Li, Ph.D.
Department of Social Medicine and Health Management, School of Public Health, Shandong University, Jinan, China.
Department of Social Medicine and Health Management, School of Public Health, Shandong University, Jinan, China.
OBJECTIVES: Reimbursement decisions for orphan drugs are complex, as conventional cost-effectiveness frameworks may not fully capture broader societal values. This study aimed to investigate public preferences regarding the inclusion of rare disease drugs in China’s Basic Medical Insurance (BMI) using a multi-center discrete choice experiment (DCE).
METHODS: From July to September 2024, a face-to-face, field-based DCE was conducted across four regions in China. Using quota sampling, participants evaluated drug profiles varying across six attributes. Mixed logit models and latent class models were used for analysis. Relative importance, willingness to pay (WTP), scenario analysis, and preference heterogeneity were estimated.
RESULTS: A total of 761 participants were analyzed, with a mean age of 47.2 ± 16.1 years. Most participants were urban residents (63.2%), employed (66.9%), and covered by urban and rural resident BMI (53.8%). The general public showed a stronger preference for including orphan drugs in insurance coverage when they target conditions with moderate untreated life expectancy, offer greater health gains, and lack existing reimbursed alternatives. In contrast, markedly low untreated life expectancy (e.g., 30% or 5%) and larger increases in insurance financing were associated with negative utility. Health gains were the most important attribute, followed by increases in BMI financing, untreated quality of life, existing BMI coverage, and untreated life expectancy. Annual WTP was ¥1.225 per capita for QALY gains (0.01-4), decreasing with lower untreated QOL. Scenario analysis showed that 78.5% would support reimbursement with maximal health gains. Preference heterogeneity was evident across sociodemographic groups. Two latent classes were identified: a "life-saving" group and a "pragmatist" group.
CONCLUSIONS: While health gains drive preferences, the public also values equity, disease severity, and affordability. Policymakers must integrate these multidimensional social values to ensure legitimacy and fairness in allocating finite resources for rare diseases.
METHODS: From July to September 2024, a face-to-face, field-based DCE was conducted across four regions in China. Using quota sampling, participants evaluated drug profiles varying across six attributes. Mixed logit models and latent class models were used for analysis. Relative importance, willingness to pay (WTP), scenario analysis, and preference heterogeneity were estimated.
RESULTS: A total of 761 participants were analyzed, with a mean age of 47.2 ± 16.1 years. Most participants were urban residents (63.2%), employed (66.9%), and covered by urban and rural resident BMI (53.8%). The general public showed a stronger preference for including orphan drugs in insurance coverage when they target conditions with moderate untreated life expectancy, offer greater health gains, and lack existing reimbursed alternatives. In contrast, markedly low untreated life expectancy (e.g., 30% or 5%) and larger increases in insurance financing were associated with negative utility. Health gains were the most important attribute, followed by increases in BMI financing, untreated quality of life, existing BMI coverage, and untreated life expectancy. Annual WTP was ¥1.225 per capita for QALY gains (0.01-4), decreasing with lower untreated QOL. Scenario analysis showed that 78.5% would support reimbursement with maximal health gains. Preference heterogeneity was evident across sociodemographic groups. Two latent classes were identified: a "life-saving" group and a "pragmatist" group.
CONCLUSIONS: While health gains drive preferences, the public also values equity, disease severity, and affordability. Policymakers must integrate these multidimensional social values to ensure legitimacy and fairness in allocating finite resources for rare diseases.
Conference/Value in Health Info
2026-09, ISPOR Asia Pacific 2026, Bangkok, Thailand
Value in Health, Volume 55, Issue S1
Code
MSR6
Topic
Methodological & Statistical Research
Disease
SDC: Rare & Orphan Diseases