spinal muscular atrophy 結果共5筆

President Tsai Ing-wen mourns the passing of lawyer and legislator-at-large candidate Chen Chun-han, praising his dedication to Taiwan and advocacy for the disabled during his funeral in Hsinchu City’s Life Memorial Park.

Renowned human rights lawyer Chen Chun-han, a legislator-at-large from the Democratic Progressive Party (DPP), passed away at the age of 40 due to complications from a cold. Despite living with Spinal Muscular Atrophy (SMA), Chen earned law doctorates from National Taiwan University, Harvard University, and the University of Michigan. DPP caucus whip Ker Chien-ming and his office are assisting with the funeral arrangements to ensure Chen’s life ends on a fulfilling note. Chen’s passing has left many in shock and mourning, not only for his political role but also for his exceptional contributions as a champion of life in the face of adversity.

The National Health Insurance (NHI) Administration in Taiwan has announced the approval of new applications for Spinal Muscular Atrophy (SMA) treatment coverage. This decision comes after the passing of lawyer Chen Chun-han, a prominent advocate for wider medication coverage for SMA. SMA is a progressive neuro-muscular degenerative disease caused by a mutation in the SMN1 gene, impacting muscle functionality and activities such as sitting, walking, speaking, breathing, and eating. The NHI Administration has included the gene therapy drug Zolgensma, which carries a price tag of NT＄49 million, in its benefits since the second half of 2023. The criteria for medication eligibility include an upper limb motor function index (RULM) score of at least 15. There are over 400 SMA patients in Taiwan, and by the end of 2023, 158 people applied for medication, with 145 approvals. The NHI Administration plans to hold an expert meeting in March to discuss expanding access to the drugs for all SMA patients, with a potential approval in the first half of 2024.

Chinese media personality Wang Zhian’s derogatory comments about a disabled person have sparked controversy. The Democratic Progressive Party (DPP) expresses regret that Wang has yet to admit his error and announces they will no longer respond to his remarks. Despite apologizing, Wang’s attempt to politicize and mask his derogatory comments is criticized by DPP spokesperson Justin Wu. The DPP emphasizes their zero-tolerance policy against discrimination and warns against shifting focus away from the issue. Despite writing a letter to the DPP, Wang still fails to admit his mistake, leading to the DPP’s decision to refrain from responding further. The DPP highlights that the disabled legislator-at-large candidate, Chen Chun-han, is highly regarded within the Tsai Ing-wen administration for his expertise in human rights law. The DPP remains committed to advocating for marginalized groups and people with disabilities, and calls for society’s joint effort in upholding dignity and equality for all.

高雄一名年僅6個月大的小男嬰，出生不久後被診斷罹患了「脊髓性肌肉萎縮症（Spinal Muscular Atrophy），簡稱為SMA」。該疾病曾被認定為無法治療的神經退化疾病，而後將影響到獨坐、行走、說話等，甚至嚴重到呼吸肌肉受創。醫師坦言，有高達八成機率的患者在「兩歲前死亡」，所幸健保於今（2023年）八月核可「基因治療藥物給付」，一劑4900萬藥物讓該名男嬰於八月施打、更成為全台首例。