As you might guess, I am Japanese, educated in Japan and trained in both Japan and the United States. From time to time, I am invited to speak on ALS at various meetings in Japan. In fact, I just returned from Tokyo, where I gave a talk on the “Clinical Care and Management for Patients with ALS” at the annual meeting for the Japanese Society of Neurology. Since the next International ALS/MND Symposium will be held in Yokohama, Japan, in December 2006, I thought you might be interested in how the health care system works there, particularly in relation to ALS.

Let me start by providing some basic facts about Japanese health care. First, it is characterized by the world’s lowest infant mortality rate and the world greatest longevity, with the elderly population increasing at a rapid pace. Even so, the total population of Japan has started to decline for the first time in recent history. For a variety of reasons, the birth rate is dropping, and changing economic policies are slowly expanding the gap between the rich and the poor. Nevertheless, there are almost no uninsured among Japan’s population.

I have always felt that ALS patients in Japan are better off than those in the USA. This is because a unique 40- year-old law determines the care of patients with “intractable” neurological disorders such as Parkinson’s disease, myasthenia gravis, ALS, and spinocerebellar degeneration. Once diagnosed, patients with “intractable” diseases are given needed care free of charge, although some benefits have diminished in the recent economic slump. This law is the single reason why so many patients automatically received permanent ventilators and stayed in the hospital. In addition, the hospital providing care received income from the government, removing financial impediments on both sides. It was also the custom in Japan for doctors to withhold a devastating diagnosis from patients, although it was shared with the patients’ families. A large proportion of patients received a tracheostomy and a permanent ventilator in the hospital for a presumed “paralyzing illness” without being given details of their condition. However, it has become impossible to maintain this practice. A sizeable proportion of hospital beds were occupied by ventilated patients, especially in large general and teaching hospitals, and those beds are needed to provide more acute care. In addition, the rate of permanent ventilation markedly dropped to about 30% when patients were informed of their diagnosis.

Currently there is extensive transition from in-hospital care to homecare for ventilated patients with ALS, creating a new strain on their homes and families. On the other hand, this shift from hospital to home has resulted in tremendous improvements in the home care system because it coincides with a need to accommodate the growing elderly population in Japan.

This trend has fostered new developments in the community-based home care systems which provide visits for patients by an ALS team from a nearby hospital. Interestingly, many communities appear to be in competition to develop their own unique home care system. Hospitals make every effort to support better care at home, so that hospital beds are not occupied by permanently ventilated patients, and a Japanese ALS advocacy organization strongly recommends that ALS patients have permanent ventilator management at home. Unfortunately, there are very few multidisciplinary care centers for outpatients and the team approach is a new, costly concept in Japan. Moreover, there are still no ALS Centers in Japan, creating some difficulty in recruiting large numbers of patients for clinical trials or other research.

However, there will be two new clinical trials starting in Japan. One is Edaravon, which is a free radical scavenger, the other study is Methy-cobalamin, a derivative of vitamin B12. Small pilot studies showed potential benefits for both. ALS experts in Japan are very eager to develop a new and better medication, and a newly reorganized Japanese drug regulatory agency (FDA equivalent) is anxious to work closely with these investigators. This is a big change (from previous stifling attitude of the government agency), and very encouraging. If theses drugs prove successful in Japan, they must be tested in the USA for a subsequent FDA approval. In the USA, I feel NIH and ALS advocacy organization such as MDA, and ALS Association are determined to develop new medications for ALS. I hear similar efforts in the Canadian authority, and as well in Europe. I think we have some key infrastructures that are ready. We just need a medication which works for ALS.

I suppose we tend to develop systems that work best for our own countries. It is difficult to say which is better or worse. Our system might be unnecessarily fragmented and it would be nice to have more streamlined care for ALS. I only hope our community and federal governments can provide more support for those who have this tough disorder. Your voice is important.

Hiroshi Mitsumoto, MD