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The NHIA stands with rare disease patients, sparing no effort in their care.

The NHIA has always cared for the medical rights and benefits of patients with rare diseases. In order to secure the high medical expenses of the rare-disease patients in the Global Budget Payment Systems, the NHIA has set up a special fund for rare diseases starting from 2005. Currently, there are 14 drugs for rare diseases under review.

In 2020, a total of 11,771 rare disease patients held a catastrophic illness card, 12,241 in 2021, and 12,524 as of June 30 2022. The designated fund for rare diseases from 2020 to 2022 are also gradually increasing from NT$7.166 billion, NT$7.601 billion, to NT$8.775 billion respectively. The NHIA reviews the budget every year in the face of ever-increasing number of patients, and spares no effort to care for rare disease patients.

Starting on July 1, 2020, the NHIA began covering the SMA drug, Spinraza, for patients confirmed in 12 months after birth and being treated before the age of 7. As of December 31, 2021, 39 patients have taken Spinraza  and NT$510 million of the drug expenditures have been claimed. The average annual pharmaceutical expenditures per patient for Spinraza was NT$8.72 million. For further analyzing the treatment benefits of covering Spinraza, the NHIA has established the SMA case registration system to collect the real-world data in order to evaluate medical efficacy.

The NHIA points out that rare disease patient groups could provide suggestions for the best use of NHI resources as partners of the NHIA and stand with the NHIA to negotiate the best prices from pharmaceutical companies. The NHIA is once again calling on the pharmaceutical companies to take care of patients with rare diseases based on their social responsibility.

  • Date:2022-09-12