An exhibition that aims to raise awareness about spinal muscular atrophy (SMA) opened at Popop Taipei in the city’s Nangang District (南港) yesterday.
The exhibition, titled “Include,” seeks to present the struggles facing people with SMA through visual art and advocate for greater government support so that “no one is left behind,” said the Become the Miracle Association, which organized the event.
The association also called on the government to expand the scope of free drug coverage for about 420 people with SMA in Taiwan.
Photo courtesy of Central America Trade Office via CNA
SMA is a rare neuromuscular disorder that results in weakness and muscle wasting, eventually causing paralysis and death.
It is different from the better-known amyotrophic lateral sclerosis, or ALS, as it primarily affects infants and children, and is a major genetic cause of infant mortality.
Association chairwoman Lee Yi-chieh (李怡潔) said a majority of SMA patients in Taiwan lack access to free treatment due to strict requirements.
One SMA treatment, Spinraza, became available in Taiwan in 2020, but patients must be diagnosed with the disease before they turn one year old to be eligible for National Health Insurance (NHI) coverage, Lee said.
By the end of last year, the NHI system had spent NT$510 million (US$16.7 million at the current exchange rate) to cover the cost of Spinraza treatment for 39 eligible SMA patients, Lee said, citing government data.
However, nearly 400 other patients have not met the threshold and face substantial financial burdens, the association said.
Guatemalan Ambassador to Taiwan Oscar Adolfo Padilla Lam, who attended the exhibiton’s opening ceremony, said he hopes the event will bring hope to SMA patients who need more public attention.
The exhibition is to run through Sunday, the association said, adding that admittance is free.
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