In Taiwan, the Rare Disease and Orphan Drug Act was implemented in 2000 - the fifth such legislation to be adopted worldwide. This legislation offers support and assistance to patients with rare diseases who need medical treatment, encourages rare disease research, and raises public awareness. With the establishment of the Committee for the Review of Rare Diseases and Orphan Drugs, the government has classified 167 diseases under the rare disease category, thereby protecting patients whose ailments are now included in National Health Insurance coverage for major diseases and injuries and whose co-payment can be waived. Furthermore, medicinal products for 81 rare diseases and special nutrient supplements for 40 rare diseases have been reviewed, established, and announced, and additional medical cases to be subsidised have been reviewed.
For the diagnosis, treatment, and drug costs for rare diseases that are not covered under the National Health Insurance Act, Article 33 of the Rare Disease and Orphan Drug Act is followed, and the Bureau of Health Promotion appropriates a budget in the form of subsidies. With the establishment of a logistics centre for rare disease nutrient supplements and drugs, 32 items were supplied in 2008 to 17 hospitals and used for 303 patients with rare diseases. The subsidised budget reached over NT$27.7 million (€600,000). In addition, ten emergency drugs for patients with rare diseases were supplied to hospitals for diagnostics and treatment. In 2008 thirteen patients used these drugs and the budget subsidised was NT$360,000 (€8000).
Providing international medical laboratory referral services for rare disease cases, information in Taiwan concerning the referrals of samples to international laboratories was integrated and established to provide international medical collaboration channels for rare diseases. The government, along with national patient alliance the Taiwan Foundation for Rare Disorders, subsidised 40% of the referral test costs. Between 2000 and 2008, a total of 312 cases were subsidised. In addition, rapid review principles for 12 rare diseases were formulated to shorten the review process for international laboratory referrals.
Construction of complete medical service networks for genetic and other rare diseases is underway via the establishment of a rare disease reporting database and single-window inquiry service. By the end of 2008, a total of 3,314 cases of rare diseases had been reported from hospitals, and genetic consultation centers were established in northern, central, southern, and eastern parts of Taiwan (10 medical centers) to provide necessary assistance.
In order to obtain the benefits offered under the country’s Rare Disease and Orphan Drug Act, patients in Taiwan must submit via their physician or medical facility a rare disorders report sheet (including suspected cases), along with an abstract of the disease, and related medical tests, to the Bureau of Health Promotion, Department of Health, Executive Yuan. Patients officially acknowledged as having a rare condition may then apply for the reimbursement of medical expenses incurred in their local medical centre or one of the country’s regional teaching hospitals. Expenses covered include diagnostics, treatment, medicinal products, and special nutritional supplements. The reimbursement cap is 70% of actual expenses but families who qualify for low-income status can receive reimbursements up to 100% for drugs and nutritional supplements for the patient.
"We can’t take care of our children forever, but a well-established system can." - The Taiwan Foundation for Rare Disorders
The Taiwan Foundation for Rare Disorders – championing the cause
Established in 1999 by two parents of children with rare diseases, the Taiwan Foundation for Rare Disorders (TFRD) championed the adoption of the Rare Disease and Orphan Drug Act. The patient advocacy group has the mission of improving the life of rare disease patients by assisting rare disease patients to receive proper medical treatment and rehabilitation, securing orphan drugs and special nutrients and fulfilling patient needs in terms of education, employment and other activities.
The TFRD undertakes or participates in the provision of patient subsidies; genetic counselling; transferring specimens abroad for diagnosis; providing nutritional counselling; performing workshops; arranging scholarships; organising patient activities and tours; fostering patient groups and formal associations; and holding public and campus advocacy activities. Financed largely by donations from the public and from enterprises, the foundation has established several subsidy funds in order to ease the financial burden placed on the families of rare disease patients. These help compensate in cases where medical insurance is lacking, or can be used to aid in emergency situations, and to assist patients who need adapted in-home and in-center services. Furthermore, for parents who have given birth to a baby with a rare disease and who are planning to have another child, TFRD has available a care assistance subsidy for prenatal examinations. In 2008, TFRD distributed funding for 99 cases of medical aid, 81 cases of livelihood assistance, 43 cases of prenatal services, and 81 cases of in-home and long-term patient care. The total amount of subsidies distributed came to $NT9,366,891 dollars (€204,000).
Genetic and nutritional counselling
Since 2001, together with the Taiwan Human Genetic Society, the National Taiwan University Hospital, and the Mackay Memorial Hospital, the TFRD has integrated the Human Resources subsidies fund, as provided by the Council of Labor Affairs, Executive Yuan, to conduct a one-year Genetic Counseling Training Program. Graduating students from areas relevant to genetic studies are hired as genetic counsellors. They make clinical rounds at the National Taiwan University Hospital and Mackay Memorial Hospital and receive on-site training by genetic specialists. Additionally, they assist patients and doctors with relevant services, connecting patients and hospital workers. The foundation also set up the “National Rare Diseases Service Center” and plans to promote such cooperative models to the genetic health counselling centers in Taiwan and set up an initial genetic counselling network. To date, eleven genetic counselling centres have been established in various medical centers and teaching hospitals in Taiwan. The Bureau of Health Promotion has evaluated the facilities to assure the quality of the genetic counselling centers.
Read the full article on rare diseases in Taiwan
Contact the Taiwan Foundation for Rare Disorders