Voices Support for SMA Pleading for Medication

It was reported that many media and legislators raised their voices for the families of SMA patients after the families wrote a letter to the President to plead for drug coverage.

In fact, one of the SMA treatment drugs, Spinraza, is already covered by health insurance. However,  the requirements are so strict that it is only available to SMA patients who are diagnosed before the age of one and have started treatment before the age of seven.

Under the pressure of media reports, the government finally issued a response on August 9. The National Health Insurance (NHI) said that the pharmaceutical company has applied to the NHI to extend the coverage to patients within 3 years of age with confirmed disease onset and no age limit for starting treatment. If we follow this scope, it is estimated that 220 to 240 additional patients will benefit, with drug costs of about NT$14.7 million per person in the first year and about NT$7.35 million from the second year onwards. The financial impact will be up to NT$3.53 billion per year. Therefore, the NHI suggested the manufacturer submit more evidence-based medical information and new financial proposals before further discussion.

SMA is the second most common chromosomal recessive genetic disorder in Taiwan (about 2.5%) behind thalassemia (about 6%). If both husband and wife are carriers, there is a 1/4 chance that the fetus will be born with SMA in every pregnancy, regardless of gender. TFRD has been advocating the prevention of rare diseases for a long time. TFRD calls on people to seek genetic counseling when considering having a child so that they can have a better plan for their next generation.

Translator: David Lee (Becker Muscular Dystrophy)