The Present Status of Public Support for Rare and Undiagnosed Diseases in Japan: Current Status and Future Perspectives of Law and Policy for Rare Diseases and Intractable/Rare Diseases

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  • UENO Aya
    大阪大学大学院人間科学研究科

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  • 日本における「Rare and Undiagnosed Diseases」（分類不可能な疾患群）に対する公的支援の現状——難病政策と難病法に関する動向と今後の展望——
  • 日本における「Rare and Undiagnosed Diseases」(分類不可能な疾患群)に対する公的支援の現状 : 難病政策と難病法に関する動向と今後の展望
  • ニホン ニ オケル 「 Rare and Undiagnosed Diseases 」(ブンルイ フカノウ ナ シッカングン)ニ タイスル コウテキ シエン ノ ゲンジョウ : ナンビョウ セイサク ト ナンビョウホウ ニ カンスル ドウコウ ト コンゴ ノ テンボウ

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Abstract

<p>Some diseases remain unclassifiable by standards of modern medicine—these are called rare and undiagnosed diseases (RUD). This paper analyzes proceedings of policy for rare diseases and intractable/rare diseases act to examine present status of public support for rare and undiagnosed diseases in Japan. Based on the analysis, currently there is no legalized support for patients with diseases without a name, and the situation is expected to remain unchanged. Namely, in proceedings of the intractable/rare diseases act it is stated that policy for rare diseases should support RUD patients, however closer analysis of the policy reveals it is impossible to provide support for patients with unnamed diseases. Thus, it is clear no real consideration was given to RUD patients in both documents. Here I aim to point out the most important issues that should be considered in the policy in order to improve it, so it will truly be inclusive of the needs of RUD patients.</p>

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