Reflections on Support for Persons Affected by the Great East Japan Earthquake
Proposals by Japan Ostomy Association

Tsuyoshi Sasaoka
Vice-president, Japan Ostomy Association, Inc.

1. Introduction

After their lives, the most important thing for ostomates are their ostomy appliances. Ostomy appliances refer to the plastic bag to collect bodily waste from the stoma surgically created in the abdomen in order to treat various illnesses including colon cancer, rectum cancer, bladder cancer, and intestinal disease, and the plate to attach it to the abdomen. They are changed every 2-4 days, and if they are not carefully handled a bad smell can develop from leaks and patients can experience skin troubles. It is not possible to tell that ostomates have a disability by looking at them, and they tend to not want to the let others know of their disability since it is a bodily-waste disability, which is tied to their dignity. During disasters, they carry this burden themselves.

2. Problems related to securing ostomy appliances during large-scale disasters

(1) Public disaster relief for ostomates following large-scale disasters

In Japan, when a major disaster hits, various forms of relief are provided in accordance with the Disaster Relief Act. Daily necessities such as clothing and bedding are provided to evacuees as outlined in the figure to the right.
Immediately after a disaster hits, affected people have to survive through self-help and mutual assistance, but after emergency shelters are opened, the government starts providing support as stipulated in the Disaster Relief Act.

At emergency shelters, daily necessities are initially provided from supplies, and after that, they are provided to persons affected by the disaster through supply agreements and disaster relief agreements or donated materials.

In the notification related to disaster relief provided by the government, ostomy appliances are given as a daily necessity when people are living at emergency shelter.

However, the systems marked with a double circle (◎) in the chart below did not cover ostomy appliances - that is, there were no stocks of ostomy appliances procured using public funds, and they were not supplied in other ways such as through supply agreements with associations dealing with medical instruments, or disaster relief agreements with other prefectures. Even if there were such systems, they did not function in previous disasters.

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(2) Public-support efforts to secure ostomy appliances during disasters

Taking into consideration the lessons from the Great Hanshin-Awaji Earthquake, the government (Cabinet Office and Ministry of Health, Labour and Welfare [MHLW]) established the “Daikibo-saigai Ni Okeru Okyuenjo No Shishin” (Guidelines for Emergency Relief During Major Disasters) in 1997 and “Saigaiji Yoengosha No Hinanshien Gaidorain” (Guidelines on Evacuation Support for People Requiring Aid During a Disaster) in 2006. Concluding supply agreements with non-governmental suppliers, and disaster relief agreements with prefectures, and other items related to ostomy appliances were newly included in the guidelines.

• (a) Revisions made it possible to use disaster relief funds to store supplies of consumables such as ostomy appliances as daily necessities for persons requiring aid during disasters.
• (b) The revisions also made it possible to supply consumables such as disposable diapers and ostomy appliances as daily necessities for persons requiring aid during disasters as stipulated in Article 23.1.3 of the Disaster Relief Act.

Revisions to the act stipulate that for ostomy appliances required during large-scale disasters, “the central government shall have responsibility for ensuring that prefectures store these items or procure them through supply agreements or disaster relief agreements with other prefectures, and that municipalities serve as the liaison for this.”

Following the Great East Japan Earthquake, emergency relief for the disaster area was provided in line with these guidelines, but ostomy appliances were not provided at all.

3. Proposals related to the disaster response for ostomates

(1) Provide ostomy appliances at emergency shelters

For emergency shelters that ostomates are at, a system should be developed in advance to store ostomy appliances so that they can immediately be provided when a disaster hits, and emergency shelters that ostomates can stay at should be designated in advance.

(2) Promote the storing of ostomy appliances using the disaster relief fund.

Ostomy appliances are indispensable items for life as an evacuee. Our proposal is that ostomy appliances be stored for disasters using funds as indicated in government guidelines.

There are more than 1,500 types of ostomy appliances, but we propose that about ten days' worth of appliances of a limited number of types for each use be stored and that training related to using these supplies during disasters be provided for ostomates as a social adaptation training project.

(3) Conclude ostomy appliances agreements with suppliers.

As for life as an evacuee, agreements in line with actual supply conditions should be concluded for individual ostomy appliances so that ostomates can obtain the appliances they are used to using.

(4) Install toilets for ostomates in the emergency shelter.

Toilets that ostomates can use should be installed in emergency shelters and fukushi (welfare) emergency shelters (for vulnerable citizens) and there should also be stores of portable toilets that ostomates can use.

(5) Conduct training on exchanging ostomy appliances for caregivers.

In 2011, caregivers received training related to stoma care, making it possible for them to exchange ostomy appliances. Local governments should provide training to caregivers so they can help ostomates who cannot exchange ostomy appliances on their own and need assistance.

(6) Obtain documents from the Health Policy Division of the MHLW related to issuing emergency passes for vehicles.

The administrative circular “Issuing Emergency Vehicle Passes For the Stable Supply of Pharmaceuticals, Medical Devices, Etc.” issued by the Economic Affairs Division, Health Policy Bureau, MHLW, included Japan Ostomy Association and Japan Association of Ostomy Appliance Industries as organizations that passes should be issued to.

(7) Make proposals related to confirming the safety of persons with disabilities.

When the disaster hit, no efforts were made to confirm the safety of persons with disabilities, including ostomates, which became an issue of public concern, but disability organizations quickly confirmed the safety of their members. Persons with disabilities who have been issued a certificate for persons with physical disabilities and ones receiving public support for daily necessities, such as prostheses, orthoses, and ostomy appliances, should be made to join the appropriate related organization, which should handle operations such as confirming their safety, which local governments cannot do, and checking that the required supplies, such as prostheses, orthoses, and ostomy appliances, have been secured.