How it got started
In March of 1998, former executive director of TFRD Min-Chieh Tseng and board member Serena Wu, both as parents of rare disease patients, silently worked to promote the systematization and legalization of rare disease issues in Taiwan. On June 16, 1998, the United Daily Evening News reported the issues of rare diseases and orphan drugs, presenting in-depth stories and testimonials of families that suffered from rare diseases. The report highlighted how the medical and social systems overlooked and unfairly treated patients with rare diseases, thus formally unveiling the opportunity for change. With tremendous support from the society and persistence, TFRD was formally established in June 1999. Believing in the fundamental right and benefits of patients as the starting point for the adoption of the " Rare Disease Control and Orphan Drug Act" through media coverage, donations from all sectors of society, and the active help of patients, families, medical professionals and relevant professionals. In January of 2000, after more than forty days and three readings in the Legislative Yuan, the Rare Disease and Orphan Drug Act was enacted the following month with the announcement from the President. From that point forward, patients were protected while they sought medical care.
Rare Disease Control and Orphan Drug Act enacted after 3 readings
At the beginning, there were three versions of laws for Rare Disease Control and Orphan Drug Act. The Bureau of Pharmaceutical Affairs (under the administration of Department of Health), the Legislation Yuan and TFRD had different emphasis when drafting the law. The Bureau of Pharmaceutical Affairs emphasized on the location and importance of orphan drugs. However, TFRD knew that rare disease patients wanted more options. Through the continued efforts of the PR, negotiation meetings, and going door-to-door to the legislators. The Bureau of Pharmaceutical Affairs, Legislation Yuan, and TFRD finally consolidated the 3 different laws into one ActIt contained 36 articles, detailing resources from all levels towards the prevention and treatment of rare diseases. The articles covered information regarding: the acquisition of orphan drugs, R&D, manufacturing orphan drugs, diagnosis and treatment of rare diseases, prevention acknowledgement of rare diseases, cooperation with international rare disease organizations, and the subsidized supply of specific pharmaceuticals and special nutrients.
Patients subsidized
Patients can apply through their doctors or medical institutions by bringing rare disorders report sheet (including suspected cases), abstract of the disease and related medical essays to the Bureau of Health Promotion, Department of Health, Executive Yuan to proceed with the application. Patients that have been acknowledged officially as having rare diseases could apply for reimbursement for the medical expenses occurred in local medical center, or regional teaching hospitals. Expenses include diagnosis, treatment, drugs, and special nutritional supplements. The reimbursement cap is 70% of actual expenses but families that qualify for low-income status can receive reimbursements up to 100% for drugs and nutritional supplements for the patient.
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