Clinic for Special Children, Strasburg, PA17579, USA.
Am J Public Health. 2012 Jul;102(7):1300-6. doi: 10.2105/AJPH.2011.300569. Epub 2012 May 17.
In 1989, we established a small community health clinic to provide care for uninsured Amish and Mennonite children with genetic disorders. Over 20 years, we have used publicly available molecular data and sophisticated technologies to improve diagnostic efficiency, control laboratory costs, reduce hospitalizations, and prevent major neurological impairments within a rural underserved community. These actions allowed the clinic's 2010 operating budget of $1.5 million to save local communities an estimated $20 to $25 million in aggregate medical costs. This exposes an unsettling fact: our failure to improve the lot of most people stricken with genetic disease is no longer a matter of scientific ignorance or prohibitive costs but of choices we make about how to implement existing knowledge and resources.
1989 年,我们建立了一个小型社区健康诊所,为没有保险的阿米什和门诺派儿童提供遗传疾病的护理。20 多年来,我们利用公开的分子数据和先进技术提高诊断效率、控制实验室成本、减少住院治疗,并在农村服务不足的社区预防主要的神经损伤。这些行动使诊所 2010 年 150 万美元的运营预算为当地社区节省了总计 2000 万至 2500 万美元的医疗费用。这揭示了一个令人不安的事实:我们未能改善大多数遗传疾病患者的命运,不再是科学无知或成本过高的问题,而是我们如何选择利用现有知识和资源的问题。