| For patients with specific rare diseases whose needs are not completely covered by the national health care system, the foundation will look into their needs and ask the government to take care of their rights. Since the implementation of National Health Insurance and adoption of Rare Disease Control and Orphan Drug Act, there are two ways for rare disease patients to apply for the reimbursement of orphan drugs. One way is to apply through the Bureau of NHI based on the orphan drugs that are approved. The other way is to apply for a special case of specific drugs that are used to treat diseases similar to the ones used by orphan drugs. However, many rare disease drugs are still in the research phase and therefore are not yet approved for treatment. In the meantime, patients can take other forms of medication to alleviate their symptoms until a permanent solution can be found. Therefore, in order to better service our patients, TFRD lobbied the Bureau of NHI for the full reimbursement of medication such as Aredia for OI (Osteogenesis Imperfecta) patients and growth hormone for PWS patients. In 2001, TFRD, Novartis Taiwan and several doctors undertook an experiment to treat OI patients with Aredia. The experiment was a success. In 2003, with the support of the experiment result, the Committee for the Review and Examination of Rare Diseases and Orphan Drugs finally approved Aredia as a treatment for OI. In May, 2004, TFRD persuaded the Bureau of National Health Insurance to cover the expenses for PWS patients’ growth hormone, Genotropin, which was not previously supported by NHI. This is a major relief for PWS families because their children can receive more effective treatment without increasing the family's financial burden. |
