In response to the healthcare provider representatives' proposal to remove orphan drugs from the National Health Insurance (NHI) global budget during recent NHI global budget negotiations, Taiwan Foundation for Rare Disorders (TFRD) Chairperson Serena Chen said that her organization is planning to send a petition to Minister of Health and Welfare (MHOW) Chiu Tai-yuan. She said that the content of the petition has been drafted and is awaiting signatures by 52 rare disorder patient groups.

TFRD Chairperson Chen said that the NHI is the only legitimate and reliable resource for treatments that can be relied upon by rare disorder patients. However, with 245 designated orphan disorders, there are only 76 drugs indicated for 40 types of orphan diseases that have been included on the NHI fee schedule, leaving 83.6% of patients without access to necessary treatments. Currently, there are 6,007 patients with rare disorders waiting on 21 types of orphan drugs to be included on the NHI fee schedule.

In response to concerns among the medical community that the inclusion of orphan drugs on the NHI fee schedule will lead to the devaluation of medical points, Chairmen Chen said that impacts will be minimal as the orphan drug earmark only accounts for 1.4% of the NHI global budget. She also hoped that MOHW Chiu Tai-yuan and National Health Insurance Administration Director General Shih Chung-liang will honor their promise to keep the orphan drug earmark on the NHI global budget to calm the worries of rare disorder patients. 

[2024-10-5/ United Daily News]