Davari Majid, Nabizadeh Azita, Kadivar Maliheh, Asl Akbar Abdollahi, Sarkheil Peymaneh
1Department of Pharmacoeconomics and Pharmaceutical Administration, Faculty of Pharmacy, Tehran University of Medical Sciences, Tehran, Iran.
2Children's Hospital Medical Center, Tehran University of Medical Sciences, Tehran, Iran.
J Diabetes Metab Disord. 2019 Apr 9;18(1):127-132. doi: 10.1007/s40200-019-00399-x. eCollection 2019 Jun.
Gaucher disease (GD) is an inherited recessive enzyme deficiency with a multisystem condition. The Iranian government covers the therapeutic expenditure of GD patients as it is not affordable for the patients. The aim of this study is to identify the main components of the cost of care in Gaucher patients (GPs) in Iran.
The Gaucher patients were identified from the Iran Food and Drug Administration (IFDA) national registry database. The direct medical costs, including medication, diagnostic services, and physician visits were considered. The prices of therapeutic and diagnostic services were extracted from Iranian medical tariff book 2014-15. Iran Food and Drug Administration determined the cost of medications.
164 Gaucher patients have been registered in Iran. A valid and reliable diagnostic tests are not used to identify the type of GD. The average health care cost per annum was 20,758 USD per patient, which is higher than 4 GDP per capita in Iran. Medication cost constitutes 95.2% of the total cost. The average cost of each GP was $1,473,818 in his/her total life.
GD is amongst the high-cost diseases and should be managed effectively. The application of oral medication for eligible GPs could improve allocative efficiency in GD management significantly. A sound, valid and reliable national clinical guideline could improve the efficiency of healthcare resources effectively. Selecting appropriate strategies for reducing the birth of a child with Gaucher, could support allocative efficiency of the limited resources effectively.
戈谢病（GD）是一种具有多系统症状的遗传性隐性酶缺乏症。伊朗政府承担戈谢病患者的治疗费用，因为患者无力承担。本研究的目的是确定伊朗戈谢病患者（GPs）护理成本的主要组成部分。
从伊朗食品药品管理局（IFDA）国家注册数据库中识别戈谢病患者。考虑了直接医疗成本，包括药物、诊断服务和医生诊疗费用。治疗和诊断服务的价格从2014 - 15年伊朗医疗收费手册中提取。伊朗食品药品管理局确定药物成本。
伊朗已登记164名戈谢病患者。未使用有效且可靠的诊断测试来确定戈谢病的类型。每位患者每年的平均医疗保健成本为20,758美元，高于伊朗人均国内生产总值的4倍。药物成本占总成本的95.2%。每位戈谢病患者一生的平均成本为1,473,818美元。
戈谢病属于高成本疾病，应进行有效管理。对符合条件的戈谢病患者应用口服药物可显著提高戈谢病管理中的配置效率。完善、有效且可靠的国家临床指南可有效提高医疗资源的效率。选择适当的策略以减少戈谢病患儿的出生，可有效支持有限资源的配置效率。
