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Hemophilia: A High Cost Low Volume Disease: Suitable Preventive Strategies for Developing and Developed Countries

机译:血友病:高成本,小剂量疾病:针对发展中国家和发达国家的适当预防策略

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Hemophilia A & B are congenital bleeding disorders affecting 1:10-20,000 population and 1:20 to 40,000population respectively. Hemophilia represents the prototype of high cost low volume disease. Eighty persons of worldhemophilia population lives in financially poor developing countries, where <2% of GDP is usually spent for total healthcare. In India, with a population of more than 1 billion and growth rate of around 2% atleast 2000 new hemophilia patientsare born every year . On a conservative estimate 50% of them have severe disease and with modern treatment, will requireadditional USD 36,000/year/patient i.e a 36 million dollar incremental additional health care burden each year to managethese 1000 severe hemophilia patient. Which is added to our existing pool of haemophiliacs, estimated at 1,00,000-1,20,000.One of the ways to manage this challenge is to establish prenatal diagnostic centres, for hemophilia, spread widely foreasy accessibility. These diagnostic centers can eventually develop into prenatal diagnosis centres for other diseases likecommon hemoglobinopathies and they should be equipped with modest molecular diagnostic facilities.Presently there are a series of techniques of different levels of difficulties and complexities, available for foetal tissuesampling and laboratory detection of prenatal diagnosis of hemophilia, allowing a centre to chose the technology suitablefor their expertise and financial capability.
机译:血友病A和B是先天性出血性疾病,分别影响1:10-20,000人口和1:20-40,000人口。血友病代表了高成本,小剂量疾病的原型。 80名世界血友病人口生活在经济状况欠佳的发展中国家,那里的GDP通常不到GDP的2%。在印度,人口超过10亿,增长率约为2%,每年至少出生2000名新的血友病患者。据保守估计,其中的50%患有严重疾病,如果采用现代治疗方法,每年将需要额外增加36,000美元/患者/即每年增加3600万美元的额外医疗保健负担来管理这1000名重度血友病患者。将其添加到我们现有的血友病患者库中(估计数量为1,00,000-1,20,000)。应对这一挑战的方法之一是建立血友病的产前诊断中心,广泛传播以方便获取。这些诊断中心最终可以发展为其他疾病如常见的血红蛋白病的产前诊断中心,并且应该配备适度的分子诊断设施,目前存在一系列难度和复杂程度不同的技术,可用于胎儿组织采样和实验室检测产前诊断血友病,使中心可以选择适合其专业知识和财务能力的技术。

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