Efforts by the Japan Patients Association and Member Groups on the Great East Japan Earthquake

Tateo Ito
Japan Patients Association

On March 11, 2011, our main directors gathered in Nagoya and Gifu in order to prepare for holding the Fifteenth Conference of the study of NANBYO (Rare and Intractable Diseases) centers which was to start the following day. During preliminary discussions in Nagoya, a strong shake hit us and we soon headed to the offices of the Gifu NANBYOREN(NANBYO regional center). Although it did not really hit us directly afterward, we turned on the TV and saw how serious the damage was. We held an urgent meeting the following morning, and we decided to have the secretary general return to Tokyo immediately, to confirm the safety of the directors of patient groups in the disaster area, and to disseminate information obtained from the Ministry of Health, Labour and Welfare (MHLW) throughout Japan.

1. Efforts by JPA

(1) Confirming the safety of the local patient groups and the desires related to support

We tried to contact with the NANBYOREN offices in the disaster area, worrying about the safety of the directors at first, but the communication network was in a state of disorder so we could only wait for contact from them with a prayer in our heart. A couple of days later, we started to hear from the directors. Some directors themselves had been forced to live in emergency shelters in the disaster area, and we came to understand that it would take some time before the groups could start undertaking activities again. Various patient groups started to undertake activities giving first priority to gathering information from the members in the disaster area and confirm their safety.

(2) Handling inquiries from patient groups throughout Japan

Starting right after the earthquake, a series of NANBYOREN offices throughout Japan made inquiries regarding conditions in the disaster area and whether there was anything they could do. For the time being some of them went to the streets to collect donations. In addition, patient groups independently ascertained the safety of their own members and began to disseminate information. While working to exchange information with the various patient groups, we thought that it would be the best if we could inform people throughout Japan of conditions in the disaster area and by doing so encourage patients in the disaster area even a bit. Therefore, we used the JPA email newsletters to provide people throughout Japan with information on the earthquake. Five days after the earthquake, the first edition of the JPA Disaster Bulletin was issued. Initially covering the activities of some member groups and news on the directors of the NANBYOREN in the disaster area, JPA issued thirty-one editions of its email newsletters through May 12, two months after the disaster.

(3) Disseminating information from entities such as MHLW

Starting just after the disaster, the MHLW sent email messages and faxes that covered various notifications and included numerous types of information. JPA forwarded this information to member groups and the directors, etc., in the area struck by the disaster.

(4) Visiting and encouraging patient groups and intractable disease counseling and support centers (“NANBYO centers”) in each prefecture and conducting surveys of their actual conditions

More than one and a half month after the earthquake, between the end of April and the beginning of May, JPA borrowed a car from the Hokkaido NANBYOREN and visited the NANBYOREN offices (directors) in Aomori, Iwate, Miyagi, Fukushima, and Ibaraki and inspected the conditions in the disaster area. During the visit to Fukushima, Tomoko Tamaki, the Ibaraki NANBYOREN's director, and a member of the House of Representatives, also participated.

The survey report compiled at that time was submitted to the JPA General Meeting, posted on the JPA's website, given at the MHLW research team meetings, and included in the programs for the International Conference for Rare Diseases and Orphan Drugs (ICORD) which was held in Tokyo in February 2012.

(5) JPA's independent fundraising activities

As for support funds, each member groups collected donations, mainly among its members. Therefore, even though JPA itself had not collected donations, it did receive donations that were supposed to be delivered directly to patient groups and patients in the disaster area, so we delivered them to each NANBYOREN office in Iwate, Miyagi, and Fukushima.

(6) The supporting Project for NANBYO patients

Starting in FY2011, JPA planned the supporting Project for NANBYO patients (in FY2011), an outsourced project from the MHLW (for FY2011, Hokkaido Research Institute for the Twenty-first Century Co Ltd. undertook the work), which was undertaken by JPA and other organizations. In the plan, the theme of “Patients' Voices” project, in which the personal notes of patients and their families were collected and documented, was changed to personal notes regarding their experiences related to the Great East Japan Earthquake. The notes were publicly sought in various forms including haiku and tanka, and they were compiled into a report at the end of 2012.

Even in FY2012, we are moving forward with efforts to compile the “patients' voices” regarding the disaster.

2. Efforts by member groups

Shortly following the earthquake, the member groups confirmed the safety of the members in the disaster area using all conceivable methods. On that basis, for the organizations of patients with metabolic disorders who need special milk, the members helped each other in ways that were only possible with patient groups, such as having all the members pool the milk they were storing at their homes and delivering it to other members in the disaster area. As for raising relief funds (support funds), each organization called on people, particularly the members, to make donations, and a rather large amount was collected in a short time. The funds were provided to parties such as the members and the patient groups in the disaster area.

The Toyama NANBYO Support Network found out through an email from a neurologist at Tohoku University what supplies and support were required in the disaster area at that time, collected the supplies (disposable diapers, over-the-counter medicines, food, water, rice, etc.) in Toyama, and delivered the supplies to Tohoku University Hospital through the support route. The Network also provided a concrete support such as dispatching cooking teams to help relief volunteer activities and making rice cake to encourage people in the disaster area.

One year after the earthquake, each patient group worked to organize information and review their activities in various media such as lectures and the organization newsletters.

3. Future issues and efforts, etc.

I have not been compiled proposals at this time. I would like to now set forth-future issues, problems discovered in current responses, etc.

(1) In Fukushima, it has been pointed out that for various reasons such as the restart of operations at a nuclear power plant, etc., people are forgetting the Great East Japan Earthquake, and various plans have been made (to prevent this), including conducting tours so that people can actually visit Fukushima and experience for themselves the real fear of the nuclear accident and the unprecedented damage caused to the residents.

(2) Evacuation of patients (for a routine disaster readiness plan)

• It is necessary to examine at ordinary times, the evacuation of patients with severe intractable diseases in time of disasters.
• An examination should be made of securing medicines, respirators, oxygen, power supplies, and fuels.
• There were many cases even when power generators were obtained; they were not in a usable state in a time of necessity.
• Households did not keep extra fuel. As for hospitals, even if they had extra fuel, it was for around several hours or at most several days, not enough to cope with a large-scale disaster that damaged all infrastructures.
• It was impossible to obtain special medicine, and patients shared it among themselves. As for storing medicine, it was found effective that using a special storage method, such as placing it in a tea container. Companies that supply items such as oxygen knew the patients' addresses and speedily delivered the supplies after the earthquake. As for evacuating patients who cannot walk, it is necessary to creatively think up the means of transportation without using cars depending on the landform.
• It is better to live with their family members in an emergency shelter than securing fukushi (welfare) emergency shelter (emergency shelters for vulnerable citizens). It is also important to examine issues such as sending people to fukushi emergency shelters far from their community.
• Emergency shelters should be equipped with blankets, cots, beach chairs, camping beds, diapers, portable toilets with seats, water, and plastic bags. These are extremely inexpensive now. For the elderly and NANBYO patients who have difficulty eating, there should be supplies of jelly nutrient drinks and water (plastic bottles), not hardtack and rice balls. Activities such as replacing all the supplies once a year in a disaster drill can be expected not only to raise awareness of residents but also boost the economy.
• As for an evacuation drill, persons with disabilities and the elderly who have difficulty walking should take part in it and their neighbors should regularly be aware of the people's ability to get around.
• Emergency shelters should be equipped with gas cylinders, cookware and heaters.
• Local public facilities, facilities for the elderly, child-care facilities, schools, etc., should be built in a safe area, so that other organizations and facilities, including commercial buildings, will also be built around them.
• In some areas, high breakwaters made the disaster worse and resulted in even more disaster victims. They also spoil the scenery. There are more ways to prevent disasters than building higher breakwaters.
• Using tsunami evacuation building is impossible for NANBYO patients, persons with disabilities, and the elderly who have difficulty walking.
• It is also important to work out some measures for secondary disasters, not only for tsunamis.
• There were many patients who had no place to go to as medical facilities were damaged in the disasters. There are some patients whose families have to live apart.
• There were some people who were not able to evacuate because of visual impairment due to a disease, but a neighbor happened to help them.
• Some nurses, health nurses, helpers, firefighters, or ambulances that helped people with severe diseases evacuate were swallowed by the tsunami and died, and this placed a major psychological burden on the patients. Some patients, who persuaded their neighbors to leave them for the evacuation, were killed by tsunami.

I hope that these opinions and experiences will be made good use of developing disaster readiness plans in each area.