pp. 19-20 in Intractable Neurological Disorders, Human Genome Research and Society. Proceedings of the Third International Bioethics Seminar in Fukui, 19-21 November, 1993.

Editors: Norio Fujiki, M.D. & Darryl R.J. Macer, Ph.D.

Copyright 1994, Eubios Ethics Institute All commercial rights reserved. This publication may be reproduced for limited educational or academic use, however please enquire with Eubios Ethics Institute.

Socio-economic aspects of the care system for incurable diseases

Koichi Emi
Director, Institute for Economic Research, Teikyo University, Tokyo, JAPAN

1. Macrosopic considerations of counter-measures against incurable diseases

It was in 1970 that counter-measures against incurable diseases began to be considered in earnest in Japan. After this the Ministry of Health and Welfare announced "Guidelines for Counter-measures Against Incurable Diseases" (Nambyo Taisaku Youkou) in 1972. This plan was implemented supported by the three pillars 1) promotion of related study and research, 2) relief of the burden of medical expenses on those concerned, and 3) the equipment of medical facilities.

The widening of the above that followed can first be seen in the increase in the number of recipients of certificates of medical service for particular diseases and secondly in shifts in the budget related to incurable diseases.

Concerning the former, the number of recipients increased 13.9 times from 17,595 in 1974 to 245,195 in 1992, while for the latter the budget was increased 8.4 times from 6,785 million Yen in 1972 to 52,390 million Yen in 1993. Although we cannot directly compare the two, this indicates roughly that while the kinds of diseases have diversified the average amount budgeted per disease has decreased accordingly.

The biggest three disease in the former group are general erythematodes (14.5%), ulcerative stomatitis (12.1%) and Parkinson's disease (11.0%). On the other hand, the top item in the budget is the cost of treatment for disabled children with serious mental and physical disease which takes up about 60% of the budget for medical expenses. Accordingly, we can see that this item is the most important area of these counter-measures against incurable diseases.

2. The actual condition of patients with incurable diseases

The counter-measures against incurable disease must be enacted on a regional basis. As regards this I would like to look at the examples of Mitaka-shi in Tokyo and the Investigative Report on the Actual Condition of Patients with Incurable Diseases in Fukui prefecture.

In Mitaka-shi, the initial plan started as a voluntary study group of ordinary citizens and medical doctors which began to interact with disabled persons. Next they went on to carry out group examinations of patients with difficult neurological conditions and aimed at establishing an "at home care system". After this, their plan extended to medical consultation for the bedridden and elderly demented persons. To develop this plan into a care system including the entire community, it is necessary to construct a network among the various health and medical organisations in the area and those involved in their work.

The Investigative Report on the Actual Condition of Patients with Incurable Diseases in Fukui prefecture (1992) gives us precious information including cross tables on 33 kinds of incurable disease characterised under about 20 headings including the attributes and actual conditions of the patients.

From this information we can see how the patients and their families deal with difficult situations and to what kind of matters the government should give their support.

3. A regional care system supportive of incurable patients

The process of establishing a regional care system in Mitaka-shi, has moved from research to practical activities on the one hand and from practical consultation to a supporting system on the other. The interest and active participation of the local administration in this process are also called for. The health, medical and welfare services are closely interrelated as they concern the individual. Accordingly, this connection should not be cut by financial restrictions, but rather the establishment of a consistent system is required. The return of the welfare laws in 1992 transferred the responsibility relating to social welfare administration to local governments and they must establish their own health welfare plan in the coming financial year. As they do this an important topic for those concerned will be how to build counter-measures against incurable diseases into the total plan.

4. Resource allocation for medical welfare fields and the related social consensus

There is a limitation to the national resources that can be allocated from medical welfare uses and it is desirable that a social consensus be obtained on the standards for suitable allocation of resources to counter-measures against incurable diseases. To this purpose, a research group in Tokyo Metropolitan area has announced a fundamental plan to indicate various standards as to the number of staff, and levels of facilities and equipment, machinery and tools for medical examination and nursing care, particularly as they relate to incurable disease and institutions caring for long term care to patients and their families.

Amidst the tendency for continuing increase in national medical expenses, what percentage of national resources in future can be allocated to the medical field should be considered from longterm perspectives and in the light of the needs in other fields. Further thought and effort is also required to make use of resources in the field of incurable disease more efficient.

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