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Understanding rare diseases and deepen their medical and social support services

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  • Modify Date:Modify Date:2019/04/17
  • Publish Date:Publish Date:2019/04/16
The European Organization for Rare Disorders (EURODIS) launched the campaign in 2008 to mark the last day of February as the International Rare Disease Day to raise the awareness and recognition of rare disease around the world. The theme of this year’s campaign is “Bridging Health and Social Care”. Seeing as the rare disease patients and their families often discontinue work or schooling during their search of related social support services, the focus of this year’s International Rare Disease Day is on the communication and connection of medical and social support service systems so as to help the patients and their families face the challenges they face on a daily basis.

Taiwan is the world’s fifth country to pass rare disease legislation and to safeguard rare disease patients by assisting them to obtain medication and subsidies
In order to strengthen the care for rare disease patients, in 2000, Taiwan passed the “Rare Disease and Orphan Drug Act” as the source of law that protects the basic medical rights of rare disease patients. At the same time, making Taiwan the fifth country in the world to pass the legislation for rare diseases. The content of the legislation combined rare disease prevention and control as well as orphan drugs, setting a precedent in the world that better meet the needs of rare disease patients. Since then, it has been amended four times, and besides assisting rare disease patients to successfully obtain the orphan drugs, special nutritional foods essential for the maintenance of life, and related medical subsidies, the Act also aims to prevent the occurrence of rare diseases, provide incentives and ensure the manufacture and research of orphan drugs and special nutritional foods. By January 2019, Taiwan government has announced 223 rare diseases, 105 rare disease drugs, 40 special nutritional foods for rare diseases, and received more than 15,500 reports of confirmed rare disease cases.

A great policy includes prevention and care
In order to enhance the care for rare disease patients, the Health Promotion Administration (HPA) initiated the “Program for Rare Disease Care Services” as of December 2017. After the open bid, the Administration commissioned 8 medical centers to jointly provide rare disease patients and families related disease information, psychological support, reproductive care, care consultation services, and outreach depending on patient needs. Furthermore, the program provides disease information and referral services to patients that include medical subsidies, special nutritional foods, emergency medication, domestic and international testing, household medical facilities for maintenance of life. The Administration integrates all the necessary services and information by combining social welfare channels and related resources from civil organizations, to reduce the burden on rare disease families. By January 2019, the program has provided 5,028 people related services.

Moreover, the HPA provides medical subsidies that have been approved and reviewed by experts, up to 80% that is not covered by the National Health Insurance Act, including foreign and domestic diagnostic testing, rental of household medical facilities, treatment, and drugs. For low-income or middle-low-income households, the HPA provides full subsidies. Additionally, the special nutritional foods needed is fully subsidized by the Administration. A single contact window consultation hotline (Tel: 02-2545-9066) is available for the public, and a logistics center that coordinates the necessary special nutritional foods and emergency drugs to maintain the life support of patients. In 2018, the Administration has subsidized 2,914 people times.

Reach out to the rare disease patients and extend the spirit of rare disease care
Rare diseases are difficult to cure, that also involve a lifetime’s long journey of treatment and care. Join hands with the government to assist rare disease patients and their family, and let’s integrate medical and social resources as well as a support service system to form a warm, loving care network that supports and provides timely assistance to the rare disease patients and families in their battle against rare diseases.