Dressed up as Taoist folk deity the Third Prince (三太子哪吒), a 12-year-old hemophiliac patient yesterday skillfully skateboarded around the National Taiwan University Hospital lobby as he celebrated the 30th anniversary of the establishment of the hospital’s Hemophilia Center.
The boy, surnamed Liu (劉), is one of many patients with hemophilia who have been able to make peace with the inherited bleeding disorder and are able to live ordinary lives thanks to the center’s up-to-date treatment and care.
Opened on July 16, 1984, the facility was the first hemophilia treatment center in the nation and gave hope to patients who had previously suffered from limited mobility in their joints and muscles due to a lack of effective treatment.
Photo: Chen Chih-chu, Taipei Times
An additional factor was that clotting factor concentrates, which need to be regularly administered to prevent bleeding and bleeding-related complications, were extremely expensive, creating a financial burden for the patients and their families.
The center helped treat more than 700 hemophiliacs during its heyday.
After an intense lobbying campaign by the center’s founder, Shen Ming-ching (沈銘鏡), dubbed the “the father of hemophilia treatment in Taiwan,” the government in 1995 included the bleeding disorder in the National Health Insurance (NHI) program’s list of catastrophic illnesses and started providing full coverage for treatment of the disease.
According to statistics compiled by the NHI Administration, hemophilia is the most expensive disease to treat in the nation and each of the 1,010 hemophiliacs in Taiwan racks up an average medical bill of NT$3.3 million (US$110,000) a year.
Shen said about 75 percent of the nation’s hemophiliac patients had severe hemophilia and required one to three sessions of preventive therapies per week, which are now also covered by the NHI program starting July 1.
“With concentrated efforts from the center and other similar medical institutions to improve the quality of care for hemophiliac patients over past decades, most are able to enjoy a life expectancy similar to that of people without the disease,” Shen said.
A group of Taiwanese-American and Tibetan-American students at Harvard University on Saturday disrupted Chinese Ambassador to the US Xie Feng’s (謝鋒) speech at the school, accusing him of being responsible for numerous human rights violations. Four students — two Taiwanese Americans and two from Tibet — held up banners inside a conference hall where Xie was delivering a speech at the opening ceremony of the Harvard Kennedy School China Conference 2024. In a video clip provided by the Coalition of Students Resisting the CCP (Chinese Communist Party), Taiwanese-American Cosette Wu (吳亭樺) and Tibetan-American Tsering Yangchen are seen holding banners that together read:
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