Proposals by the Japan Epilepsy Association
Yuji Tadokoro
Secretary General, Japan Epilepsy Association (Nami-no-Kai)
1. Opinion based on overall damage caused by the Great East Japan Earthquake
With epilepsy, patients who suddenly stop taking medicine may fall into status epilepticus, and in many cases, they will experience full body convulsions which will not stop until treatment is provided. Even if the seizure is stopped by treatment, there is high probability that the person will suffer central nervous system sequela, and the mortality rate is not low.
On account of the Great East Japan Earthquake, there were more than a few patients who had to live in emergency shelters with an insufficient supply of medicine. Even the news carried a story of a head nurse of an isolated hospital saying, “What we need is medicine for high blood pressure, diabetes, and seizures.” For patients who have been forced out of their daily life and are living in emergency conditions, a call for medicine is a fervent call for life. According to information from several specialists in the disaster area, there were times when hospitals and pharmacies ran out of anti-epileptic drugs. This means that not only people living in emergency shelters but also those living at home were in danger.
Insufficient supplies of anti-epileptic drugs put people's lives in danger, and replenishing supplies is a major issue during emergencies. This time, luckily, the various pharmaceutical companies provided large volumes of anti-epileptic drugs at the request of the Japan Epilepsy Association and the Japan Epilepsy Society, but problems related to various issues such as fuel and designating anti-epileptic drugs as emergency medicine arose, and it was difficult to effectively transport and distribute the medicine in the disaster area.
There is a pressing need, using these lessons, to designate anti-epileptic drugs as emergency medicines, improve transportation of these drugs to and epilepsy care in disaster areas, and establish hub hospitals for patients who do not need critical care in the prefectures hit by the disaster, in order to protect the life of even one more person with epilepsy and to help them live lives with peace of mind .
2. Efforts by the Japan Epilepsy Association
(1) Launch of a disaster response headquarters and confirming the safety of patients and their families
The Japan Epilepsy Association established the Disaster Response Headquarters (president served as head of headquarters) on March 14, and the headquarters immediately started to confirm the safety of members. However, there were power outages and communication problems in a wide area, and return postcards were used to ascertain people's safety, conditions after the disaster, and necessary supplies since other forms of communication, such as phones (both landlines and mobile phones), faxes, and email were not fully functioning. Through these efforts it was possible to quickly ascertain issues such as gasoline shortages and concerns about medicines, to confirm how epilepsy medical facilities in the disaster area were functioning, and to communicate with the disaster area.
(2) Providing proper medical information
The following message was continually communicated through the local media: “Epilepsy requires continued treatment. People with epilepsy should not stop taking their medication. People with epilepsy who suddenly stop taking medicine can experience unstoppable whole-body seizures referred to as status epilepticus, no matter what type of seizure they normally experience. This is extremely dangerous, because it can leave lasting effect and is life-threatening. Even though medication can calm the seizures, it is not an exception. People taking anti-epileptic drugs should promptly see a doctor so that they do not run out of epilepsy medicine.”
(3) Distribution of information on medical facilities and establishment of toll-free phone service
A local response support center was established in Sendai-shi, and the priority for seeing a doctor at medical facilities in the disaster area and the latest information on the provision of medical services was communicated to people with epilepsy and their families through various media including the government, mass media, and related organizations.
In addition, a toll-free phone counseling service for use with mobile phones was launched in order to lessen, even slightly, the concern of persons with epilepsy and their families and to help resolve problems in daily life.
(4) Creating a disaster response guide and emergency card
Following the Great East Japan Earthquake, various types of information on emergency responses was provided by the Ministry of Health, Labour and Welfare. In order to make use of this information for future measures, a Disaster Response Guide, which summarizes the information, and a personal emergency card was created and distributed throughout Japan. It is hoped that the lessons learned from this disaster will help patients with epilepsy and their families confront the disease and lead to forward-looking efforts.
3. Issues that came to light since directly after the disaster
Even though various types of information were broadly communicated and special medical teams visited emergency shelters, it was impossible to ascertain the actual conditions of persons with epilepsy. There were some people who did not want others to know they had epilepsy and others who would not go to emergency shelters out of concern of having a seizure. A major issue is how to provide these people with information and support during emergencies.
There were also a report that through one organization for a difficult-to-treat neurological disease, there were active interactions among people with the same disease in each city, and because of this, even when the Great East Japan Earthquake hit, horizontal cooperation quickly developed, and medicine, water, and gasoline were efficiently procured with people taking turns, and everyone worked together. It was learned that in the field of epilepsy, it is important to actively promote the routine exchange of information with epilepsy friends in the same area and friends in related peripheral fields, to not rely on the government and organizations, and to make preparations to protect one's own life and maintain one's livelihood.
4. Proposals regarding the future
(1) Establishing a system so that persons with epilepsy can continue to receive stable medical treatment
There are situations when suddenly stopping treatment for epilepsy, a chronic disease, can result in a sudden deterioration in symptoms, and patients sometimes fall into status epilepticus. Therefore, it is important that there is a system that makes it possible to ensure a stable supply of anti-epileptic drugs. It is important to inform related parties and organizations of special provisions related to medical treatment covered by insurance and independent medical treatment and the special provisions for obtaining medication even without a prescription, which were implemented this time. As for medical treatment paid with government subsidies, it would be desirable if there were a waiver for out of pocket expenses. It is also important to create a system so that priority is given to the delivery of anti-epileptic drugs to disaster areas, which would include measures such as designating emergency vehicles. There is a need for emergency measures to ensure proper medical treatment for people requiring it in the disaster area, such as ensuring access to hospitals, including measures to give these people priority supply of fuel and guaranteeing group access to doctors, and providing subsidies for lodgings when receiving treatment in faraway areas.
(2) Giving consideration to support for daily life for people with epilepsy in the disaster area
In particular, there is a need for special consideration for life at emergency shelters. Separate from general emergency shelters, it should be possible to give people with epilepsy priority access to emergency shelters that can provide the care they need. For example, for persons who have epilepsy seizures, there should be a system so that they can have space to get good sleep and to ensure privacy, and for persons with behavior disorders, there should be a system to provide an environment so that they will not bother people around them too much and to provide support for home treatment, etc. Furthermore, at each emergency shelter, it is important to have a system to sufficiently provide announcements regarding issues such as medical facilities that can supply necessary medical treatment and social resources for counseling regarding general support for daily life.
(3) Providing aid for support activities in the disaster area by organizations related to persons with epilepsy
As for support for people with disabilities or diseases, particularly epilepsy, support and information from related organizations is indispensable. However, having each organization conduct activities in the disaster area on their own is inefficient, and will resulted in mixed-up information. Therefore, it is important to create a system that can secure and provide an activity hub for related organizations and provide information to the various organizations.
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<Emergency Card-Disaster Response Version>（Description of the above image）