超350家全球媒体关注！乐城这例患者故事刷屏海外→

发布日期: 2024-12-27

近日，酸性鞘磷脂酶缺乏症（ASMD）创新药奥立扑酶α落地乐城先行区。这是全球首个也是唯一获批的针对ASMD的突破性酶替代治疗药物，被美国食品药品监督管理局（FDA）授予突破性疗法及孤儿药认定。该消息迅速引发广泛关注，各大国际主流媒体、国内权威媒体再次将目光聚焦乐城。 新华社发布文章《Ever-opening health industry delivers hopeful ending to a family's disease-fighting odyssey》（中文：健康产业持续开放，助力家庭抗病之路迎来希望）报道乐城。 New Zealand Star，Europe Sun，Sydney Sun，Paris Guardian，Malaysia Sun，Philippine times，The Africa News.net，Herald Globe，Vietnam Tribune等超350家国际主流媒体分别转载了新华社报道。 △新华社报道截图 报道原文及翻译如下： HAIKOU, Dec. 18 (Xinhua) -- The parents of seven-year-old Gungun (pseudonym) finally saw a light at the end of the tunnel when they heard that a foreign medicine they craved for their ill son might be available at a special medical pilot zone in Hainan Province. Four years ago, the parents got the heart-wrenching message that Gungun was diagnosed with Acid Sphingomyelinase Deficiency (ASMD), a life-threatening genetic metabolic disease with extremely low incidence globally. 新华社海口12月18日电 对于七岁的滚滚（化名）的父母来说，当他们听说海南乐城国际医疗旅游先行区可能引进他们急需的外国药物时，终于看到了曙光。四年前，滚滚父母得知了一个令人心碎的消息，滚滚被诊断出患有酸性鞘磷脂酶缺乏症（ASMD），这是一种全球发病率极低的危及生命的遗传性代谢疾病。 A DISEASE-FIGHTING ODYSSEY 一场与疾病抗争的旅程 Since then, the family from Wenzhou, Zhejiang Province embarked on an odyssey to seek medical solutions to the rare disease, visiting hospitals in many places around the country. 自那以后，来自浙江省温州市的这家人开始了寻找罕见病医疗解决方案的漫长旅程，他们到全国各地的许多医院就诊。 However, since ASMD therapeutics in China are mainly symptomatic and supportive treatments with no targeted drugs available, Gungun's condition further deteriorated, leaving him unable to walk properly, dine, bathe, or go to school like his healthy peers. 然而，由于中国对ASMD的治疗方法主要是对症治疗和支持性治疗，缺乏针对性药物可用，导致滚滚的病情进一步恶化，使他无法像健康的同龄人那样正常行走、用餐、洗澡或上学。 Promising news came for the family: in 2022, Olipudase alfa, an innovative drug for ASMD treatment, was approved to hit the market in Japan, the United States and the European Union. However, domestic agencies had not imported the drug due to the scarcity of patients in China. 对滚滚一家人来说，一个令人鼓舞的消息传来：2022年，用于治疗ASMD的创新药物奥立扑酶α在日本、美国和欧盟获得批准上市。然而，由于中国患者稀少，国内机构尚未进口该药物。 △奥立扑酶α "After second reckoning, we found that it is not realistic to travel abroad to use Olipudase alfa," Gungun's father said. “经过再三考虑，我们发现出国使用奥立扑酶α是不现实的，”滚滚的父亲说。 While seeing a doctor in Shanghai early this year, they were told there was a good chance for the drug to become available at the Boao Lecheng International Medical Tourism Pilot Zone. Established in 2013, the pilot zone was granted special policies enabling eligible pharmaceuticals and medical devices licensed abroad yet domestically unavailable to be applied for patients through streamlined procedures. 今年初在上海看医生时，滚滚一家被告知在博鳌乐城国际医疗旅游先行区有可能获得这种药物。乐城先行区成立于2013年，被赋予了多项特许政策，允许引进使用国外已上市、国内尚未上市的创新药械，并通过简化程序方便患者申请使用。 In February, the family flew to the Lecheng pilot zone and lodged their earnest request for Olipudase alfa, to which they received an immediate response. The central pharmacy of the Lecheng pilot zone commenced a mission to search for the drug through cooperation with pharmaceutical enterprises on a global scale. It helped pair domestic drug agencies and hospitals to participate in the cause. 二月，滚滚一家人飞往乐城先行区，希望能在乐城用上创新药奥立扑酶α，他们立即收到了回应。乐城先行区中心药房开始与全球制药企业合作寻找这种药物，并让国内药品代理和乐城园区医疗机构参与进来。 A HOPEFUL ENDING 一个充满希望的结局 Roughly nine months later, thanks to coordinated efforts, Olipudase alfa officially entered the pilot zone at the Ruijin-Hainan Hospital affiliated with the Shanghai Jiao Tong University School of Medicine. 大约九个月后，得益于多方协调努力，奥立扑酶α正式落地乐城先行区内的上海交通大学医学院附属瑞金医院海南医院（海南博鳌研究型医院，简称瑞金海南医院）。 On the very day of its arrival, the medicine was administered to Gungun at the hospital, making him one of the first recipients in China. 在药物到达的当天，滚滚就在该院用药，成为中国首批接受该药物治疗的患者之一。 After his initial medication, Gungun's health condition has remained stable, showing no signs of adverse reactions. 在接受初次药物治疗后，滚滚的健康状况保持稳定，没有出现不良反应的迹象。 "Gungun has been receiving follow-up treatment to keep his health condition from deteriorating rapidly. Now, with the help of Olipudase alfa, the first goal is to maintain his condition, and the second goal is to reverse his disease to a certain extent. I'm very hopeful about the result," said Ma Xiaoyu, deputy director of pediatrics at the hospital. “滚滚一直在接受后续治疗，以防止他的健康状况迅速恶化。现在，接受奥立扑酶α治疗后，首要目标是维持他的病情，第二个目标是在一定程度上逆转他的疾病。我对结果非常乐观，”上海瑞金医院儿科副主任医师马晓宇说。 Gungun's family also shared the optimism. "Hopefully, one day he can go to school and travel around like his peers, as well as make friends and integrate into society," said Gungun's father. 滚滚的家人也分享了这种乐观情绪。“希望有一天他能像同龄人一样去上学、四处旅行，交朋友并融入社会，”滚滚的父亲说。 Gungun is one of the beneficiaries of diversified diagnostics and therapeutics offered by the Lecheng pilot zone. 滚滚是乐城先行区多样化创新疗法的受益者之一。 So far, the pilot zone boasts more than 30 public, private and international hospitals. It has established partnerships with over 170 pharmaceutical and medical device companies, including pharma giants Merck & Co., Inc. and Novartis, from 20 countries and regions. 迄今为止，乐城先行区拥有30多家公立、民营和国际医院，已经与包括制药巨头默克公司和诺华在内的来自20个国家和地区的170多家国际药械公司建立了合作关系。 An EVER-OPENING HEALTH INDUSTRY 一个持续开放的健康产业 Building on previous supportive policies, China announced in September that it would apply exemptions on import tariffs and value-added tax for eligible drugs and medical devices in the Lecheng pilot zone before 2025. 在之前的支持性政策基础上，中国于9月宣布，在海南全岛封关运作之前，乐城先行区将对符合条件的药品和医疗器械免征进口关税和增值税。 While introducing more world-class medical resources to China, the pilot zone is also reaching out to a growing number of clients overseas, especially from Southeast Asian countries such as Indonesia. 在为中国引入更多世界级医疗资源的同时，乐城先行区还不断拓展海外客户群，尤其是来自印度尼西亚等东南亚国家的客户。 The pilot zone is becoming a burgeoning international medical tourism destination, buoyed by China's facilitation measures, such as unilateral visa exemptions for more countries, to welcome international visitors in the post-pandemic era. 得益于中国在后疫情时代推出的便利措施，如为更多国家提供单方面免签政策，乐城先行区正逐步成为一个新兴的国际医疗旅游目的地。 In 2023, it received 302,500 medical tourists, up 60.05 percent year on year. This year, it received over 320,000 medical tourists during the January-October period, marking a 37 percent year-on-year increase. 2023年，乐城先行区接待了302,500游客，同比增长60.05%。今年1月至10月，乐城先行区接待的游客超过320,000名，同比增长37%。 Lecheng's development epitomizes China's continuous endeavor to open up its health sector for the benefit of patients. 乐城的发展体现了中国为造福患者而不断努力开放医疗卫生领域的决心。 In one example, Chinese authorities unveiled a plan in September to allow the establishment of wholly foreign-owned hospitals in some major cities, including Beijing and Shanghai, as well as the island province of Hainan. In addition, China has also made efforts to accelerate the approval of new drugs already in the overseas market. 例如，今年9月，中国有关部门公布了一项新政策，允许在北京、上海等一些主要城市以及海南全岛设立外商独资医院。此外，中国还努力加快已在海外市场上市的新药的审批速度。 In September, China approved the use of an immuno-inflammatory product developed by French healthcare company Sanofi as a targeted therapy for chronic obstructive pulmonary disease. The drug's approval was granted even faster than in the United States and the EU, according to Sanofi. 今年9月，中国批准了法国制药公司赛诺菲开发的一款慢性阻塞性肺疾病靶向治疗药物。据赛诺菲称，该药物的获批速度甚至快于美国和欧盟。 This month, the company signed a memorandum to invest some 1 billion euros (about 953 million U.S. dollars) to establish a new insulin production base in Beijing. Frédéric Oudéa, chairman of the board of directors of Sanofi, expressed the company's confidence in the long-term growth prospects of the Chinese market. 本月，该公司签署了一份备忘录，计划投资约10亿欧元（约合9.53亿美元）在北京新建一个胰岛素生产基地。赛诺菲董事长兼首席执行官弗雷德里克·乌代阿表示，公司对中国市场的长期增长前景充满信心。 China's policies of opening up and encouraging innovation and the sound business environment for foreign enterprises have strengthened Sanofi's commitment to participating in China's economic growth while advancing the high-quality development of its pharmaceutical industry, Oudéa said. 乌代阿表示，中国对外开放和鼓励创新的政策以及为外资企业营造的良好商业环境，坚定了赛诺菲参与中国经济增长、推动中国制药行业高质量发展的决心。 部分外媒报道截图 Europe Sun Europe Sun是一家专注于欧洲新闻的在线媒体平台，致力于为读者提供关于欧洲、欧盟以及国际重要事件和全球商业新闻，在欧洲及国际上产生了广泛的影响力。 New Zealand Star New Zealand Star是新西兰知名主流媒体之一，在新西兰具有广泛的权威性和影响力。 Sydney Sun Sydney Sun创办于1910年，是澳大利亚悉尼地区知名的在线新闻媒体之一。 Paris Guardian Paris Guardian创立于2002年，旨在提供巴黎最新的本地新闻，以及法国和国际头条新闻。 Mississippi State News.net Mississippi State News.net是美国密西西比州的在线新闻平台。 Malaysia Sun Malaysia Sun是马来西亚及东南亚地区知名的新闻门户网站之一。 Philippines News.Net Philippines News.Net是一家提供菲律宾及周边地区新闻资讯的媒体平台。 Philippine times philippine times是菲律宾老牌在线报纸，以“菲律宾的骄傲”为座右铭，是菲律宾和世界各地人们获取该国新闻的主要资源。 Vietnam Tribune Vietnam Tribune是一家专注于越南新闻及国际新闻报道的在线媒体平台，成立于2002年，致力于为读者提供越南国内及国际新闻资讯。 North Korean News.net North Korean News.net成立于1999年，是一家关注朝鲜新闻报道和国际头条新闻的在线媒体平台。 Herald Globe Herald Globe 成立于2002年，旨在提供最新的世界新闻，覆盖整个非洲、亚洲、欧洲、中东、北美和南美以及加勒比地区。 The Africa News.net The Africa News.net是一家专注于非洲新闻报道的在线媒体平台，是非洲地区知名的在线新闻媒体之一。 Zambia News.Net Zambia News.Net是赞比亚国内知名的在线新闻平台，专注于赞比亚国内新闻及国际新闻报道。 Guatemala News.net Guatemala News.net是一家提供危地马拉及国际新闻报道的在线媒体平台。