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Strive for Patients of Specific Disease
Strive for patients of specific disease

Activate the regulations on medication subsidy to secure patients’ life
  In order to protect patients’ rights for medication, the Rare Disease Control and Orphan Drug Act had guaranteed the basic rights for the use of medications. However, medication for rare disorders still needs to go through a prolonged reviewing process by the National Health Insurance system. Ming-Ming, a five-year-old child who was diagnosed with aHUS, had a serious infection after catching a cold. Ming-Ming needed to inject Eculizumab immediately or might lose his life due to severe uremia. Although Eculizumab was on the list of Orphan Drugs at the time, it was not covered by the National Health Insurance. TFRD activated the subsidy system and negotiated with the pharmaceutical company to provide Eculizumab, which costs NT$200,000 per shot. Ming-Ming’s life was saved thanks to the efforts.
  
The reviewing process of National Health Insurance medical coverage takes a long time, but life cannot wait. The Ministry of Health and Welfare agreed to offer the six-month medication subsidy in January 2015 due to TFRD’s lobbying. The new regulation  subsidizes partial expenses when medications for rare disorders are not covered or are under reviewing processes by the National Health Insurance. It is a pioneering act since the Rare Disease Control and Orphan Drug Act was publicized 15 years ago.


Regulations on Medical Care Subsidization for Rare Diseases: Art.7