BEJING, Sept. 27, 2021 /PRNewswire/ -- On September 25, 2021 in Beijing, China, the "Global Drug Information Platform for Rare Diseases" was successfully kicked off at Ali Center in Beijing. Jointly built by Bo'ao Winhealth Rare Disease Medical Center and Ali Health, the Platform aims at addressing the challenges of unavailability and unaffordability of the overseas innovative therapies facing the Chinese patients with rare diseases. The Platform includes an online and offline integrated health service network.
A total of 22 innovative drugs for rare diseases are available for the first batch, including Glycerol Phenylbutyrate, Amifampridine, Afamelanotide and other therapies that are approved in developed markets but not yet available in China. Users only need to search for "patient assistance" on Alipay homepage to access to the "Zone for Rare Disease Drugs" and complete and submit basic information as required before enjoying the relevant services provided by the Platform.
According to WHO statistics, there are north of 1,400 rare diseases known in China, with about 20 million patients with rare diseases, of which nearly half are children patients. "No medicine available is one of the pain points in the treatment of rare diseases in China." Zhu Kun, Member of the Expert Committee on the Diagnosis, Treatment and Security of Rare Diseases under the Chinese National Health Commission and Associate Research Fellow at the Chinese Academy of Fiscal Sciences stated that "there are currently 17 rare diseases in China for which patients face the dilemma of 'drugs available at abroad but unavailable at home'". Against this backdrop, the accessibility of drugs for rare diseases should be a top priority.
Hainan Boao Lecheng International Medical Tourism Pilot Zone (hereinafter "Boao Lecheng Pilot Zone") is the one and only "medical special zone" open to the outside world in the medical field in China. Up to now, 175 categories of licensed drugs and medical devices have been imported. These drugs and medical devices are stored in the bonded warehouse in a centralized manner, and the whole process can be monitored and traceable. Doctors are also in place to deliver medication therapy management and follow-up for patients to ensure the health and safety of medication for patients.
Lyu Xiaolei, Deputy Director of Boao Lecheng Pilot Zone Administration, held that the "pilot" policy of Boao Lecheng Pilot Zone enables "orphan drugs" approved abroad but not yet in China to be used in Boao Lecheng Pilot Zone, so that Chinese patients are allowed to use international innovative drug therapy to delay or cure diseases as early as possible. At the same time, after Several Measures for Further Optimizing Regulatory Services to Support the High-quality Development of Hainan Boao Lecheng International Medical Tourism Pilot Zone was jointly issued by Hainan Provincial Medical Products Administration, Hainan Provincial Health Commission and Haikou Customs on September 15, the review and approval process for imported drugs and medical devices urgently needed in clinical practice will be further simplified, and it will be more convenient for patients to seek medical treatment in Boao Lecheng Pilot Zone. "I hope that through the cooperation with Ali Health, Boao Lecheng Pilot Zone will effectively bring together high-quality resources, provide special supporting measures for importing global drugs for rare diseases, and benefit more patients with rare diseases in China," said Lyv Xiaolei.
According to Ma Li, Senior Vice President of Ali Health, information asymmetry is a pain point faced by the medical industry. Because of the low incidence, complex symptoms and difficult diagnosis of rare diseases, it is difficult to obtain drug-related information quickly. "The Global Drug Information Platform for Rare Diseases is an effective exploration by multiple parties for the construction of support system for rare diseases. Ali Health hopes to smooth the channels for medical treatment and medication for rare diseases through Internet technology, so as to help patients receive better treatment and have a place in the society," said Ma Li.
Wang Yiou, Secretary-General and Founder of the Beijing-based Illness Challenge Foundation (ICF), mentioned that patients with rare diseases in China have great unmet medical needs, including needs for innovative drugs and medical devices for rare diseases and Food for Special Medical Purpose (FSMP) that are available at abroad but inaccessible in mainland China. The special policy of Boao Lecheng Pilot Zone and Bo'ao Winhealth Rare Disease Medical Center offer hope for patients. As an NGO initiated by patients with rare diseases, ICF has been committed to mobilizing all walks of life to provide multi-faceted support to patients with rare diseases. Going forward, it will work closely with Boao Lecheng Pilot Zone to enable the favorable policies of Boao Lecheng Pilot Zone to benefit more patients.
Jack Wang, Founder, Chairman and CEO of Hong Kong Winhealth Pharma Group, stressed that with a consistent purpose of "making difference for the rare", Winhealth Pharma has been exploring and solving the problem of "the last mile of medication" for patients with rare diseases in China. Thanks to the inauguration of the Global Drug Information Platform for Rare Diseases, drugs will be accessible to more patients and families with rare diseases, and the urgent needs of patients for medication will be effectively identified. I hope that more patients with rare diseases can benefit from this platform.
Xiao Li, Head of Bo'ao Winhealth Rare Disease Medical Center, highlighted that the Center will take into account the needs of patients collected by the Global Drug Information Platform for Rare Diseases, land urgently needed drugs and medical devices in mainland China through the "pilot" policy in Boao Lecheng Pilot Zone, and accelerate the introduction into the Chinese market to benefit more patients with rare diseases.
The Global Drug Information Platform for Rare Diseases will leverage Ali Health's strengths in Internet technology, AI, cloud computing and other fields, as well as the advantages of Bo'ao Winhealth Rare Disease Medical Center in drug resources, diagnosis and treatment services, experts among others in relation to rare diseases, explore more innovative models of "Internet + medicine", and provide increasing intelligent medical solutions for patients with rare diseases while promoting the development of rare disease cause in China.
About Ali Health
Ali Health is one of the companies invested and held by Alibaba Group. Since joining the big family of Alibaba in 2014, thanks to the advantages of Alibaba Group in e-commerce, mobile Internet, big data and cloud computing, IoT and other fields, Ali Health focused on drug traceability code business in its start-up stage and gradually developed innovative businesses such as pharmaceutical e-commerce, Internet-based medical services and health management services, making it Alibaba's flagship platform in the comprehensive health sector. Ali Health serves for hundreds of millions of family medical and healthcare administrators across the country and will gradually put in place a reliable and inclusive medical and healthcare service platform with "accessible quality medicine, distinguished doctors, and well-established security measures", so as to be an expert in taking good care of you and your family's health.
About Winhealth Pharma
Hong Kong Winhealth Pharma Group is a China-based, global innovative biomedical company founded in 2006, providing novel breakthrough therapies to patients with rare diseases and other unmet medical needs. The Group has established long-term strategic partnership with dozens of world-leading biotechnology companies, including Immedica, Roche, Pfizer, Kyowa Kirin, Shionogi, Cumberland Pharmaceutical, and Daiichi-Sankyo. It has built a unique, balanced and diversified portfolio with numerous orphan drugs and specialty products at commercial and late clinical stages, and will continuously look to bring in more innovative therapies from the globe. For more information, please visit http://www.winhealth.hk, or follow "Winhealth Pharma" on WeChat.
About Bo'ao Winhealth Rare Disease Medical Center
Bo'ao Winhealth Rare Disease Medical Center was officially launched on April 10, 2020 in Hainan Boao Lecheng International Medical Tourism Pilot Zone, jointly built by Winhealth Investment (HK) Limited, Lecheng International Medical Tourism Pilot Zone Administration, and Bo'ao Worldlight Hospital, and invested by Winhealth Investment (HK) Limited.
With the mission of "introducing the most advanced rare disease medical products into Chinese market at a pace synchronized with the world, bringing unprecedented hope to patients with rare disease in China and neighboring countries and regions", we are committed to establishing the most comprehensive and advanced rare disease clinical medical center with the most advanced diagnosis and treatment services in China, Southeast Asia and other surrounding areas. For more information, please follow "Bo'ao Winhealth Rare Disease Medical Center" on Wechat.
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