Starting in July 1, 2004, the system of “Global budget of the National Health Insurance” was implemented. Since there are limited resources, hospitals have budgetary constraints which regulates serious disease patients care to the sidelines. Months before the implementation of NHI, TFRD had been conducting a questionnaire for patients to find the best specialists. Furthermore, the foundation requested, during the 8th conference of the "Committee for the Review and Examination of Rare Diseases Control and Orphan Drugs" that the Bureau of National Health Insurance find a solution to counteract the potential negative impact the Global Budget of National Health Insurance may have on rare disease patients right to receive proper medical care. The foundation met frequently with the Bureau of National Health Insurance and the National Health Insurance Medical Fee Agreement Commission to discuss and find a resolution.
After extensive lobbying efforts by the foundation, on June 29, 2004, the deputy Minister of the Department of Health Mr. Hung-Ren Chang called and expressed his interest and concern. That same day, the various departments of the Bureau of National Insurance received written notices regarding the implementation, protection, and monitoring of rare disease medical care when signing management plans with various hospitals. They would strictly supervise the hospital's execution of the plans.
By September 2004, the Bureau of National Health Insurance gave a positive response that starting in 2005, there will be a fund of $2.2 billion NT dollars allocated specifically to protect the rights, medication and access to drugs for rare disease patients. For 2006, the Bureau of National Health Insurance has granted a global budget $ 2.6 billion NT dollars specifically for patients with hemophilia and rare diseases. In 2007 and 2008, rare diseases and hemophilia paitents were granted 3 billion NT dollars and 3.6 billion NT dollars of golbal budget. We will continue to fight for constant and stable funding for rare disease patients in the future.
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