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.
REASONS FOR TRAVEL: An assistant professor said that proposed amendments to penalize drivers if they used drugs overseas would not deter people from traveling People who operate a motor vehicle under the influence of marijuana would have their driver’s license revoked, even if they used the substance while overseas, the Ministry of Transportation and Communications said yesterday, citing proposed amendments to the Road Traffic Management and Penalty Act (道路交通管理處罰條例). The amendments would also authorize the government to revoke the licenses of people determined to have used Category 1 or Category 2 narcotics, even if they were not operating a vehicle while under the influence of drugs, as well as ban them from taking the license test for three years, the ministry said. People aged 18 or
GLOBALGIVING: ‘ Caving to external pressure is not acceptable for an organization that has cultivated justice reform and human rights for 30 years,’ one NGO said A slew of non-government organizations (NGOs) have withdrawn from the GlobalGiving fundraising platform after it announced it would use “Chinese Taipei” instead of “Taiwan” from next month. The Taiwan Good Rice Association wrote on Facebook on Friday that it was informed on April 28 via a teleconference call of the change, which was made because the platform wanted to operate in China. Taiwan Good Rice is to terminate all cooperative relationships with GlobalGiving in response to the platform’s “unilateral and non-negotiable” decision to remove references to Taiwan, the NGO said. “Taiwan is in the official name of Taiwan Good Rice Association and the
HEAVY WEATHER: Typhoon Jangmi is due to crash straight into the Ryukyus as airlines look to shift flights to larger aircraft or cancel flights to Okinawa entirely Taiwan’s international air carriers announced flight adjustments over the weekend as Typhoon Jangmi is forecast to hit the Ryukyu Islands today and tomorrow. The Central Weather Administration (CWA) upgraded Jangmi from a tropical storm to a typhoon at 8am yesterday, with the eye located 580km south of Naha city. It was moving north at 19kph. Today, China Airlines’ CI-120, CI-121, CI-122 and CI-123 flights between Taoyuan and Naha, Okinawa, have been canceled as well as CI-132 and CI-133 between Kaohsiung and Naha. EVA Air’s BR-112, BR-113, BR-186 and BR-185 flights between Taoyuan and Naha are also canceled. Low-cost carrier Tigerair Taiwan canceled IT-230,
MULTIPRONGED APPROACH: China has sought to pressure Palau across a number of fronts, but the island nation has staunchly resisted overtures to ditch Taiwan Palau has been firm in backing Taiwan despite Chinese pressure that uses tourism economics, cyberattacks and criminal infiltration as tools to threaten the Pacific ally into renouncing its recognition of Taiwan as a sovereign state. The Presidential Office yesterday announced that Vice President Hsiao Bi-khim (蕭美琴) would visit Palau from Saturday to Wednesday next week at the invitation of Palauan President Surangel Whipps Jr. Whipps in April said in an interview that China had outspokenly asked Palau to “denounce Taiwan.” “And we have said: ‘We have no enemies, but nobody tells us who our friends are,’” he said. Whipps has told reporters multiple times
RSS