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 Act, which covered the needs of rare diseased patients in respect to: location, designation of orphan drugs, relevant needs, prevention & management of rare diseases, and international medical cooperation. After the passage of the Act patients can receive the following reimbursements from the government.
Rare Disease Proclamation:
By the end of April of 2006, the government classified 159 diseases to be under the rare disease category thereby protecting patients under the “Rare Disease Control and Orphan Drug Act” with 2,117 cases confirmed. TFRD has been serving patients with 191 rare diseases affecting 2,252 people. So far 77 orphan drugs and 40 special nutrients have been approved for treating patients by the government. According to the act, these drugs and special nutritional food can be imported and the National Health Insurance reimburses up to 56 out of 77 orphan drugs. The official definition of rare disorders is a disease if it's prevalent in 1:10,000 people. It must be recognized by the rare disorder and orphan drug committee, or recognized and declared by central competent authority. 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.
Medication
When facing problems such as procurement of unapproved medication, unavailability of approved medication, or unreasonable drug prices, patients may apply through medical institutes for the importation of orphan drugs to the Bureau of Pharmaceutical Affairs on an Ad hoc basis. Maximum dictation amount applied is the amount needed in 2 years.
Transferring Specimen
Subsidized by the Bureau of Health Promotion, TFRD has established a "International Specimen Testing and Transfer Services Center". Bureau of Health Promotion and TFRD will cover 80% of the total testing cost and the patient will be responsible for the remaining 20% of the cost.
Taiwan Foundation for Rare Disorders
Tel: 886-2-2521-0717 #151
Genetics Counseling Center
In order to build the national network of rare disorders and advance related prevention activities, the Bureau of Health Promotion has evaluated medical facilities to assure the quality of genetic counseling centers. Approved medical institutions include:
Buddhist Tzu Chi General Hospital
886-3-8563092
Chang-Gung Memorial Hospital-Linkou branch
886-3-3281200#8278
China Medical University Hospital
886-4-22502121#2128
Chung-Ho Memorial Hospital, Kaoshiung Medical
University
886-7-3121101#6465/ 886-7-3114995
Chung Shan Medical University Hospital
886-4-24739595#2203
Mackay Memorial Hospital
886-2-25433535#2547/2548
National Cheng Kung University Hospital
886-6-2353535#4740
National Taiwan University Hospital
886-2-2312-3456#6708
Taichung Veterans General Hospital
886-4-23592525#4026/ 04-23509615
Taipei Veterans General Hospital
886-2-2871-2121#3467
Orphan Drug and Nutritional Supplement Supply Center
In order to procure and transport orphan drug and special nutrients, Bureau of Health Promotion founded "Orphan Drug Distribution Center" and "Special Nutritional Supplement Supply Center" to facilitate the process of distributing drugs.
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