Families ask NHI to add drug

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

muscular atrophy (SMA) patients yesterday urged the government to include SMA medication in the National Health Insurance (NHI) system.

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]

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