HOPE FOR PARENTS: A new spinal muscular atrophy drug gave parents hope for children with the disease, now they need the government to add it to its system
Taipei Times
Date: Nov 25, 2019
By: Lee I-chia / Staff reporter
Democratic Progressive Party Legislator Chen Man-li (陳曼麗) and family members of spinal
A girl holds a sign reading “I want to be a princess, I need Spinraza, please help me” outside the Legislative Yuan in Taipei yesterday, calling on the government to include spinal muscular atrophy medication in the National Health Insurance system.
Photo: CNA
More than a dozen children with SMA and their family members — holding signs with slogans such “I want to live on, please give me medicine,” “I don’t want a distorted life” and “please save SMA children, time is not our friend” — gathered at the Legislative Yuan to call for government action.
“President Tsai, please give use medicine to save us. We want to live on,” they chanted together.
SMA, a rare genetic neuromuscular disorder that most often affects infants and children, is characterized by weakness and atrophy in skeletal muscles, and is caused by a loss of specialized nerve cells called motor neurons that control muscle movement. [FULL STORY]
