Persons with Severe Disabilities, such as ALS, Must Have Emergency External Power Supplies For At Least Three Days
Kimiaki Kanazawa
Secretary General, Japan ALS Association
1. Through the Great East Japan Earthquake
The Great East Japan Earthquake had a major negative impact on patients with amyotrophic lateral sclerosis (ALS) and their families. ALS is a progressive disease in which motor nerves are selectively attacked, making it impossible for sufferers to speak or move, and within 3 - 5 years, the person is not able to live without a ventilator. As of the writing of this piece, there were 8,500 patients with ALS in Japan, around 30% of them use ventilators, and around 80% receive treatment at home. (At the end of March, 2014, the number of patients rose by 9,240.)
The tsunami following the Great East Japan Earthquake caused the death of six ALS patients. In Iwate, the head of the branch association (Kamaishi-shi, wheelchair) and one patient using a ventilator (Kamaishi-shi) died, and in Miyagi, the deaths of four people were confirmed. In addition, many patients using a ventilator were forced to be hospitalized in order to evacuate for any of various reasons such as to secure a power supply during extended power outages following the disaster. Some hospitalized patients in Miyagi and Fukushima were sent to Yamagata, Tokyo, Kanagawa, and Niigata by Self-Defense Force helicopter since hospitals were not functioning. Even now, one and a half years after the disaster, conditions remain serious - there are some patients recuperating at the hospital they evacuated to, and in Fukushima, caregivers fled because of the radiation from the nuclear accident, leading to a decline in their numbers.
2. Work by the Japan ALS Association
The Japan ALS Association (JALSA) has 5,300 members and is a nation-wide association mainly for patients and their families but also including surviving family members, doctors, etc. Following the Great East Japan Earthquake, JALSA was responsible for confirming the safety of patient members in the disaster area immediately after the disaster, supplied various types of relief goods, including medical and nursing goods, requested the Ministry of Health, Labour and Welfare (MHLW) provide emergency support, and undertook support activities in partnership with medical facilities. In addition, the Great East Japan Earthquake Support Committee was established within the headquarters, an ALS fundraising drive was held both in Japan and overseas, and condolence money has been paid to patients, mainly ones living in Iwate, Miyagi, and Fukushima. I would like to provide a summary of JALSA's work and issues.
(1) Confirming the safety of persons and protecting personal information
For two days after the disaster, Tokyo, where JALSA's headquarters are located, was in a state of chaos, and the branch offices in the disaster area could not be contacted by phone until the evening of March 13. Directors were mainly responsible for confirming the safety of patient members through branch offices, but the directors themselves were also affected by the disaster, and it was impossible to contact members as they had evacuated. For this and other reasons, it took more than a month to confirm the safety of members and ascertain conditions following the disaster. Even so, confirming members' safety using the members list progressed relatively smoothly, and it was useful for supplying relief goods and paying condolence money later. However, JALSA requested the government release a list of names so that it could provide support to patients who were not members, but the request was refused because the government said it needed to protect personal information.
(2) Providing relief goods to hospitals and people affected by the disaster
Starting around March 14, preparations for support activities were launched. The Fukui branch office immediately responded to an Internet-based request by Fukushima members for relief goods such as sanitary supplies, and with the cooperation of various organizations including independent living support groups in Fukui and Shiga, the first shipment of supplies arrived in Koriyama-shi on March 17. Although roads were still closed at that time, the supplies were sent via the Sea of Japan from Fukui. In addition, it was possible to deliver 1.5 tons of enteral feeding supplement from both domestic sources and the Taiwan ALS Association to hospitals on the coast of Miyagi affected by the disaster through the cooperation of hospital doctors. It was somehow possible to deliver relief supplies to the bases in the disaster area, but it was extremely difficult to transport them from the relay base to individual homes because of the shortage of gasoline in the local area.
(3) Request for MHLW to provide emergency support
On March 17, various emergency requests, including the following, were submitted to the State Minister of Ministry of Health, Labour and Welfare Kohei Otsuka (at that time): (a) issue travel permits to organizations transporting relief goods such as medical and nursing supplies; (b) allow patients to be covered by nursing insurance at where they evacuated to and allow attending caregivers to be covered by the Services and Supports for Persons with Disabilities Act; (c) give medical practitioners and caregivers priority access to gasoline in the disaster area; (d) and exclude medical facilities from planned power outages. As for (b), on March 18, the following day, the Health Insurance Bureau, MHLW, issued an administrative circular to related entities.
(4) Support for backup power supplies in case of a power outage
As an emergency response to blackouts due to subsequent aftershocks and planned blackouts because of suspended operation at the Fukushima nuclear power plant, external and internal batteries for ventilators were lent out through the cooperation of related organizations. On April 27, the Health Service Bureau, MHLW, issued a notification stating that entities such as hub hospitals for intractable diseases start to lend patients electric equipment, such as generators. In addition, revisions were made to compensation for medical treatment starting in April of this year at the request of entities such as JALSA, and the revisions clearly include the lending of external batteries as accessories for the ventilators.
(5) Fundraising drives
JALSA opened a bank account for donations to support ALS patients in the disaster area, called for donations from both in Japan and overseas, and held street fundraising drives. As of July 31, 2012, a total of 12,632,169 yen had been collected. Around 9 million yen was used for various purposes including condolence money for patients in the disaster area, remuneration for the transport of relief goods, and measures taken by branch offices to support people affected by the disaster, and the remaining funds are expected to be used to support reconstruction in the long term.
3. Issues that came to light since directly after the disaster
(1) It is necessary to have an emergency power supply that can operate for at least three days (72 hours) after a disaster.
During the three days immediately after a disaster, it is important to be ready and prepared to protect oneself (self-help). After that, mutual assistance among entities such as regions and volunteers becomes possible, and after conditions settle down, public support by the government becomes possible. During the self-help phase, the most important thing is securing an emergency independent power supply for items such as ventilators. In Miyagi, the longest power outage lasted four days (98 hours). After a ventilator's internal battery dies, persons using a ventilator can use an external battery or a manual resuscitator (Ambu bag), but if that is impossible, their only option is go to a hospital with a power supply. The charge on the internal battery depends on the type, but many are for a mere several hours. In order to survive extended power outages, it is important to have at least two external batteries and a power generator for charging. While using one battery in the ventilator, the other battery can be charged with a generator or car or at a hospital or similar location. In addition, an inverter can be attached to the cigarette lighter in a car, and the ventilator attached to this. It is possible to use a ventilator for long periods of time by using an exterior battery along with a power generator.
Some patients survived for three or four days after the disaster in this way. In addition, there was a shortage of gasoline for cars used to charge batteries, and neighbors shared gas, helping patients. Patients need to store gasoline in a can to fuel cars and power generators. If using items other than those produced by the manufacturer of the ventilator as an emergency power supply for the ventilator, it is necessary to be aware the ventilator may not be compatible with some power supplies and that the company handling the ventilator should be consulted. As noted above, since April this year, it has been possible to borrow external batteries for ventilators using medical insurance. Patients themselves have to pay for the second and subsequent batteries. There is also a need for emergency power supplies for not only ventilators but also phlegm aspirators, electric beds, power air mats, lighting, etc. Following the disaster and during the planned blackouts, patients who had emergency exterior power supplies that could be used for extended periods of time were able to get by without needing to be hospitalized to obtain access to a power supply. People learned from this experience that it is important to maintain and spread the use of emergency exterior power supplies that can easily and safely be used during emergencies and that are easy to conduct regular maintenance on. In addition, it is important to provide training on how to use foot-powered aspirators and manual resuscitators (Ambu bag) when there is no power.
(From a talk by a patient's family member who is a member of the Miyagi branch office regarding his experience)
The earthquake cut off our main utilities. It was impossible to even call ambulances since mobile phone services was down. Power was required for everything, and we needed to at least continue to operate the ventilator. As time passed, I had sleepless nights as concern and stress increased because reconstruction was difficult and there was not even the prospect of it being completed. It was probably even more difficult for the family member with ALS himself. As days passed, I began to worry about gasoline and thought that it would be completely impossible to move to an emergency shelter. I decided that somehow we would survive. It was really a difficult five days. When the electricity was restored, we all broke down into tears. (Wife)
Water was restored in two days, and power in four days (on the night of the March 15). Therefore, we were able to get by without having to resort to emergency hospitalization. People need at least a manual resuscitator, hand-powered aspirator, inverter for using power from the car, power generator, radio, and batteries. Gasoline was also necessary to power the generator (patient).
(2) Need to promptly rebuild the medical and nursing system in the disaster area
There were reports from branch offices affected by the disaster that on the coastal areas which sustained major damage, the number of doctors, nurses, and helpers supporting patients declined, and that it is still difficult to provide home care. In particular, the situation has grown more serious in Fukushima, where the nuclear accident occurred. When patients affected by the disaster who were hospitalized in order to evacuate return home, it will be important to secure housing, and this will be a major financial burden on both patients and their families. There is a need to reconstruct as quickly as possible a local medical and nursing support system through reconstruction support by the central and local government.