孤儿药物计划的支持有三个支柱:个人评价,社会评价和匿名利他主义
Darius N Lakdawalla1, Charles E Phelps2, Hong-Hanh Nguyen2
1Schaeffer Center for Health Policy and Economics, University of Southern California, Los Angeles, CA, USA.
概括
社会对孤儿药物计划的支持源于对治疗严重疾病的偏好,对公平的承诺和对罕见疾病患者的利他主义. 这些因素推动了对孤儿药物倡议的支持.
科学领域:
- 卫生经济学 卫生经济学
- 社会福利理论社会福利理论
- 制药政策 制药政策
背景情况:
- 孤儿药物计划旨在鼓励开发治疗罕见疾病的方法.
- 市场失败往往导致对治疗不太常见疾病的投资不足.
研究的目的:
- 识别和描述社会和个人对孤儿药物计划的支持来源.
- 探索公众愿意为罕见疾病治疗提供资金的经济和道德基础.
主要方法:
- 使用通用风险调整成本效益方法来评估为健康收益支付意愿.
- 开发了一个社会福利功能 (SWF),结合个人价值观,道德权重,水平公平和匿名利他主义.
主要成果:
- 对于患有罕见疾病的个体来说,他们表现出更高的愿意支付健康收益,支持孤儿药物计划.
- 展示了横向公平和匿名利他主义如何增加社会对这些计划的支持.
- 强调,利他主义偏好越来越有利于公众对罕见病的投资,因为私营市场对它们服务不足.
结论:
- 确定了支持孤儿药物计划的三个关键支柱:偏好严重疾病治疗,社会福利强调横向公平,以及匿名利他主义.
- 结论是,这些支柱共同证明并鼓励社会支持孤儿药物开发.
- 强调利他主义在解决罕见疾病治疗开发中的市场失败方面的作用.
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