Updated on 1 September 2014
Unable to afford drugs, millions of children suffering from rare disorders die in Taiwan
Singapore: The Chinese Nationalist Party (KMT) made an appeal to the Taiwan government, calling for the speedy passage of an amendment to the Rare Disease and Orphan Drug Act at the next legislative session.
At the press conference, Mr Yang Yu-hsin, legislator, KMT, said that the amendment seeks to include orphan drugs in the National Health Insurance (NHI) program. It also urges the government to provide psychological counseling services to patients affected by rare illnesses and their families.
Mr Yu-hsin stated that the government should offer subsidies for medications, food and care necessary to help sustain the lives of such patients.
"With the number of children suffering from rare diseases increasing in Taiwan, immediate action by the government to guarantee lifetime treatment and support for these children is necessary," he added.
Mr Serena Chen, founder, Taiwan Foundation for Rare Disorders, said that though the amendment was well structured, unless the government improves its efficiency, such public health concerns will remain unaddressed.