Hung Tzu-jen (洪子仁), executive director of the Taiwan College of Healthcare Executives and vice superintendent of Shin Kong Wu Ho Su Memorial Hospital, stated that because rare diseases are predominantly hereditary, their risks are not a result of individual choice and are difficult to prevent or mitigate through private insurance. Therefore, coverage for orphan drugs should not be viewed as "extra care" from the National Health Insurance (NHI), but rather as a core responsibility that embodies the NHI's spirit of social risk-sharing. If the NHI system fails to support these patients, it effectively excludes them from the safety net and undermines the legal and ethical foundations of the healthcare system.
However, while the 2026 NHI global budget is nearing NT$1 trillion, orphan drug funding represents only 1.38% of that total, yet it must cover the life-saving needs of nearly 20,000 patients. In reality, there is an estimated NT$1.8 billion shortfall in orphan drug funding, which not only impact the inclusion of new drugs on the NHI fee schedule but also threatens treatment continuity and compromising drug access for thousands of patients.
Regarding coverage of gene and cell therapy and other high-cost innovative treatments, the NHI is not without options. Tools such as conditional reimbursement, installment payments and performance-linked mecahisms already exist. The key issue is not whether to provide coverage, but how to utilize these tools to ensure patients receive timely treatment while managing financial risks.
The government must address the structural funding deficiency for orphan drugs by using the general public budget or special budgets to fill current gaps. Furthermore, the orphan drug budgeting process should be institutionalized and made predictable, paired with a forward-looking health technology assessment (HTA) mechanism. Only then can the NHI truly fulfill its promise to prioritize "acute, severe, difficult, and rare" conditions, ensuring the system does not abandon those in their greatest time of need.
[2025-12-30/Commercial Times]
