『保健医療科学』 2021 第70巻 第5号 p.488-494（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 ＜総説＞
在宅難病療養者とその家族の災害対策
奥田博子
国立保健医療科学健康危機管理研究部
Disaster preparedness at home for patients with intractable diseases and their families
OKUDA Hiroko
Department of Health Crisis Management, National Institute of Public Health
抄録
近年，壊滅的な被害をもたらす規模の災害が頻発化する傾向にある.このような災害発生後，地域において迅速な支援を要する住民は，救急医療を要する重篤な負傷者や，人工呼吸器などの医療機器を装着する難病患者を含む在宅療養者である.
2011年に発生した東日本大震災は，戦後わが国で最大規模の人的・物的被害をもたらした.この震災時の対応の検証を踏まえ，災害対策基本法の一部が改正(2013年6月)され，避難行動要支援者名簿の作成が義務化された(災害対策基本法49条の10).さらに，その後も頻発する災害時の犠牲者の多くが，高齢者や障害者であることから，ハンディキャップを持つ人々への一層の防災対策の必要性が示唆された.そこで2021年5月，災害対策基本法の一部改正が行われ，区市町村に対し避難行動要 支援者ごとの個別避難計画の作成が努力義務化された.また，個別避難計画の作成に必要な，個人情報の利用及び個別避難計画の活用に関する平常時と災害発生時における避難支援等関係者への情報提供について，個人情報保護条例等との関係を整理し規定を新設した.避難行動要支援者名簿の作成の義務化から約8年が経過し，名簿作成は全国の自治体において着手されているが，個別避難計画の作成済み市町村は約1割にとどまる.さらに，避難行動要支援者名簿への難病患者の掲載割合は約6割であり，支援を要する対象者が掲載されていない可能性がある.
本稿では，災害時に配慮を必要とする者に関する国の対策の変遷と，在宅難病療養者とその家族の尊厳を保持し，地域で安心して生活を営む観点から，在宅難病療養者の災害対策上の課題を整理する.
キーワード：在宅難病療養者・家族，災害対策，地域保健活動
Abstract
In recent years, disasters on a catastrophic scale have tended to occur more frequently. In addition to the severely injured, who require advanced emergency medical treatment, individuals who require prompt support from the hyper-acute stage after a disaster include those who are treated at home, such as patients with intractable diseases who wear advanced medical equipment such as ventilators.
The Great East Japan Earthquake, which occurred in 2011, resulted in the largest scale of damage to occur in Japan since the war. Based on the verification of this disaster, the Basic Act on Disaster Control Measures was partially amended (June 2013) to make it compulsory to create a list of persons who require sup- port for evacuation actions (Article 49-10 of the Basic Act on Disaster Control Measures). In addition, many of the victims of the disasters that have occurred frequently thereafter have been among the elderly and the disabled, suggesting the need for further disaster prevention measures for persons with handicaps. In May 2021, the Basic Act on Disaster Control Measures was partially amended to make it mandatory for munici-palities to prepare individual evacuation plans for each person requiring evacuation action. In addition, pro- visions were newly established for the use of personal information, as well as the provision of information on the use of individual evacuation plans to evacuation support personnel and other related parties during normal times and in the event of a disaster, which are necessary for the preparation of individual evacuation plans, in line with the Personal Information Protection Ordinance.
Roughly eight years have passed since it became compulsory to create a list of persons who need support for evacuation, and all municipalities in Japan, including those in the process of creating this list, are engaged in related efforts. However, only about 10% of municipalities have created individual plans, thus far. Furthermore, the percentage of patients with intractable diseases on the list currently stands at roughly 60%.
This paper summarizes the changes in national disaster prevention measures for persons who require consideration during disasters, and the issues in disaster prevention measures for people with intractable diseases at home, from the perspective of maintaining the dignity of persons at home with intractable dis- eases and their families, and enabling them to live in their communities with peace of mind.
keywords：patients and families with intractable diseases at home, disasters，regional health activities
