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Public Hearing On Orphan Drugs Budget
Aiming to secure the fund for orphan drugs by National Health Insurance (NHI), after TFRD had lobbied legislators on various occasions, Legislator Liu Chien-kuo, along with Legislators Su Ching-chuan, Huang Hsiu-fang, Chen Chao-tzu, and Wang Cheng-hsu, held a public hearing on the “2025 NHI Earmarked Budget for Orphan Drugs” on October 30.
The hearing brought together 28 rare disease groups, with more than 50 people in attendance, as well as representatives of four allied groups, who made their voices heard together. In addition, the National Health Insurance Administration, the Health Promotion Administration, and the Department of Social Security all provided the government's response.
The executive director of TFRD, Ruth Chen, explained the appeals put forward at the public hearing:
Appeal 1: The National Health Insurance Act is duty-bound to take care of patients with rare diseases.
Appeal 2: The funding for orphan drugs is not subject to a unit value, and the two do not affect each other.
Appeal 3: Patients with rare diseases receive no commercial insurance, and they urgently need the National Health Insurance to protect their medical rights under the law.
Appeal 4: Article 33 of the Rare Diseases Act only subsidizes the part that is not covered by the National Health Insurance, which is the second line of defense and cannot replace the National Health Insurance.
Appeal 5: Look forward to reasonable and sustainable growth of the rare disease drug funding and an increase in the budget implementation rate.
Appeal 6: Seek to work with the medical community to resolve the dilemmas of the NHI system.
Ms. Serena Wu, founder of TFRD, has repeatedly called for support. She says that health insurance is mandatory social insurance as stipulated by law and is the only medical insurance that patients with rare diseases can rely on. Currently, only 76 rare drugs are covered by health insurance, and many more are waiting in line. She urges everyone to support and help so that patients can rebuild their lives, return to school and work, and live a dignified life.
Following this, representatives of each group took the floor. After everyone had fully expressed their opinions, three points were concluded:
1. The Ministry of Health and Welfare shall respond to the demands of the disease groups within one month.
2. The Ministry of Health and Welfare shall strive to reasonably increase the budget for rare disease drugs to balance the treatment needs of various diseases.
3. The Ministry of Health and Welfare is requested to review the implementation rate of the special fund for rare disease drugs, which should be implemented at 100%, and at the same time formulate a priority order for new drug reimbursement so that patients can effectively use new drugs.
Translator: David Lee (Becker Muscular Dystrophy)