Life Center / Reported by Xiao Youchen
▲SMA patients were forced to go to China to survive. (Picture / recapitulated from Facebook @李伊洁Li Yi Jie)
Taiwanese patients with spinal muscular atrophy (SMA) were “abandoned by their own national health insurance” and had no choice but to transfer to China, where the cost of drugs is lower, for treatment. Perhaps because people are under the eaves, the patient said in an interview with the Chinese media that he felt the warmth of the “motherland”. Li Yijie, chairman of the Taiwan Window of Life Charity Association, said that we are not without medicines, nor are we without excellent medical teams. Unfortunately, there is no support from health insurance, so that patients do not know what to do when faced with nearly tens of millions of medical expenses. In response, Li Bozhang, director of the National Health Insurance Administration, said that manufacturers will be invited to negotiate prices next week, with the goal of negotiating before the Lunar New Year.
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Li Yijie posted on Facebook on the 14th that a well-known SMA patient was “abandoned by his own national health insurance” because he did not meet the payment conditions, resulting in a price of more than NT$2 million per injection of targeted drugs, so he was forced to go to the hospital for only 15 yuan per injection. 4 treatments in China for 10,000 yuan!
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Li Yijie said that 47 countries around the world have paid for SMA treatment-related expenses, including the United Kingdom and Australia, which are known for their emphasis on economic benefits and are regarded as the main reference objects of Taiwan’s health insurance. “I want to ask about the remaining SMA patients in Taiwan. Where should we go?”
Li Yijie said helplessly: “I am really sad, because we are not without medicines, and we are not without a strong medical team, but without the support of health insurance, we really can’t do anything.” We only want to, and can only implore the government, to let the 400 SMA patients who are waiting for life-saving medicine for health insurance receive the same warm hope and touch.
Li Yijie also said that when her mother learned that the patient had finished the first treatment, she was deeply impressed by the video of the patient crying and snot in the hotel. Through the cold screen, she felt full of hope and emotion, but It also made her feel helpless.
According to the data of the National Health Insurance Department in August 2011, the National Health Insurance has paid for the “Spinraza” drug used for the treatment of SMA since July 1, 2010, to the group of people who are “diagnosed within 12 months of birth and started treatment under the age of 7 years old” until 110 years As of December 31, the number of users was 39, and the declared drug fee was about 510 million yuan. The average annual medical insurance payment per patient was 8.72 million yuan, with a maximum of 14.7 million yuan and a minimum of 7.35 million yuan.
“China Times News Network” reported that Li Bozhang, the director of the National Health Insurance Administration, said that many manufacturers have taken advantage of my country’s health insurance system, and often bid farewell to specific drugs. Unfortunately, the total amount of health insurance is limited, and they can only try their best to respond to the needs of patients with rare diseases.
Li Bozhang said that China successfully negotiated prices with manufacturers last year, “the original drug price was discounted by 30% before agreeing to include it in health insurance.” my country is the fifth country in the world to include SMA patients in health insurance benefits. “Next week, manufacturers will be invited to come forward.” Come to bargain, the goal is to negotiate before the Lunar New Year.”
