『保健医療科学』 2021 第70巻 第5号 p.469-476（2021年12月）
特集：難病患者と家族の尊厳を保持した共生社会の探求 ＜解説＞
難病対策の取組状況及び今後の方向性について
倉澤秀之
厚生労働省健康局難病対策課
Current situation and future direction of intractable disease measures
KURASAWA Hideyuki
Intractable/Rare Disease Control Division, Health Service Bureau, Ministry of Health, Labour and Welfare
抄録
難病対策については，2015年の難病法施行により，公平かつ安定的な医療費助成の制度が確立した ほか，難病の患者に対する医療提供体制の確保，調査研究の実施及び難病の患者の療養生活の環境整 備等が講じられてた.2019年より，難病法附則第2条の施行後5年以内を目途とした見直し規定を踏まえ，難病対策の見直しの議論が開始され，2021年7月，研究・医療の推進及び地域共生の推進を柱とした見直しの方向性を示した「難病・小慢対策の見直しに関する意見書」が取りまとめられた. 今後，この意見書の内容を踏まえ，厚生労働省において，制度見直しのために必要な検討を行った上で，地方自治体等の関係者への制度見直しの内容について丁寧な説明等を行うなど，見直し後の制度を円滑に施行することが重要である.
キーワード：難病対策，難病法，施行後5年後見直し
Abstract
Since the Act on Medical Care and Social Supports for Patients with Intractable/Rare Diseases was en- acted in 2015, fair and stable assistance for medical expenses has been established. In addition, adoption of the Act also resulted in the securing of a system for medical care provision, as well as implementation of related research and improvement of the medical treatment environment. The Amendment of the Act has been conducted since 2019, based on supplementary provision 2, which prescribes that amendment of the Act should be carried out within five years from its enaction. Through such amendment, the “submission regarding measures for Intractable Disease Measures and chronic diseases in childhood” was summarized in July 2021. This submission indicates that amendments should focus on the promotion of research and medical treatment, as well as creation of an inclusive society. Based on this submission, subsequent discus- sions regarding the amendment have been conducted at the Ministry of Health, Labour and Welfare. The smooth enforcement of the amended system is important, through the provision of detailed explanations to related organizations, such as local governments.
keywords： intractable disease measures, act on medical care and social supports for patients with intractable/ rare diseases, amendment of the act
