SMA PATIENTS DEMAND INSURANCE COVERAGE

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Spinal muscular atrophy. A rare disease that causes progressive muscle wasting. There is a cure but it costs as much as 2 billion won. SMA patients demand national health insurance coverage be expanded.

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[Soundbite] "Abolish it! Abolish it!"

Members of a disability organization stage a rally. They demand measures to cut medical costs for spinal muscular atrophy patients.

[Soundbite] Han Myung-hee(Solidarity Against Disability Discrimination) : "We will not stay silent when our rights to live are jeopardized. We will fight till the end."

SMA restricts movement by making muscles weak. It's a rare disease affecting only one in 100,000 people. Three kinds of SMA treatments have been developed so far. Two injections, Spinraza and Zolgensma, and an oral drug named Evrysdi. Health insurance covers only the injections. Spinraza, which is administered three to four times a year, costs 100 million won per shot. Zolgensma, which requires only one shot, costs 2 billion on. Patients have to pay six million won. The rest is covered by health insurance, but the criteria are quite complicated. Spinraza is covered by health insurance when patients are diagnosed prior to turning three years of age. As for Zolgensma, only infants younger than 12 months old are eligible for insurance benefits.

[Soundbite] Noh Geum-ho(SMA Patient) : "I am terrified at the thought of the possibility of never being able to receive medical treatment because of unconditional demands to make things better or to maintain the status quo."

SMA patients demand health insurance criteria be eased for their treatment and expansion to cover oral pills as well.