印度60多名儿童和青年因罕见疾病的治疗中断而死亡,45名议员要求取消资金上限。 Over 60 children and young adults in India have died due to interrupted treatment for rare diseases, prompting 45 MPs to demand removal of a funding cap.

由45名印度议员、许多医疗专业人员组成的跨党派团体警告说,60多名患有极端罕见淋病存储障碍的儿童和青年人,由于印度国家罕见疾病政策下50万卢比的年度供资上限造成的治疗中断而死亡。 A cross-party group of 45 Indian MPs, many medical professionals, has warned that over 60 children and young adults with ultra-rare lysosomal storage disorders have died due to treatment interruptions caused by a Rs 50 lakh annual funding cap under India’s National Policy for Rare Diseases. 现在有近100名接受酶替代疗法的患者面临切断, 如果不采取紧急行动, 预计会有更多的死亡. Nearly 100 patients on Enzyme Replacement Therapy now face cutoffs, with more deaths expected if urgent action isn’t taken. 由Anil Bonde博士领导的印度医学议员论坛呼吁取消或延长上限,并建立一个可持续的、有戒环的筹资制度,以防止进一步丧失生命。 The Indian Medical Parliamentarians’ Forum, led by Dr. Anil Bonde, is calling for the cap to be removed or extended and for a sustainable, ring-fenced funding system to prevent further loss of life.