How policymakers value end-of-life treatments for rare and common diseases in China: evidence from a contingent valuation study

Background: Understanding policymakers’ value judgements in reimbursement decisions is essential for promoting equity and guiding informed healthcare decision-making. This study aimed to estimate and compare Chinese policymakers’ willingness-to-pay (WTP) per quality-adjusted life year (QALY) specifically in end-of-life treatment scenarios involving life-threatening common and rare diseases.

Methods: We conducted a contingent valuation study employing single-bounded dichotomous-choice questions among 120 experts formally appointed by China’s National Healthcare Security Administration to serve on the National Reimbursement Drug List Expert Committee in recent years. Participants evaluated hypothetical scenarios describing end-of-life treatments providing a one-QALY gain for patients with life-threatening common or rare diseases. Data were collected primarily through face-to-face interviews, supplemented by online responses when in-person meetings were impractical. Statistical analysis was performed using probit regression models, and t-tests were conducted to compare WTP values between scenarios.

Results: A total of 99 policymakers participated. Participants’ WTP per QALY for end-of-life treatments in common disease scenarios ranged from CNY 78,031 (0.98 times GDP per capita) to CNY 126,449 (1.58 times GDP per capita). In contrast, WTP was significantly higher for rare diseases, ranging from CNY 183,392 (2.29 times GDP per capita) to CNY 219,691 (2.75 times GDP per capita). Analysis of individual characteristics revealed that female participants and those with expertise in pharmacoeconomics exhibited significantly higher WTP values in common disease scenarios (p < 0.05), though these factors had varied effects in rare disease scenarios.

Conclusions: This study provides novel estimates of Chinese policymakers’ WTP per QALY specifically in end-of-life contexts involving common and rare diseases, highlighting the significant impact of disease rarity on reimbursement decisions. These findings offer empirical support for adopting differentiated cost-effectiveness thresholds tailored to end-of-life treatments based on disease rarity in China.