No one knows when disorders of unknown cause could strike. Aren't measures against intractable diseases one of the safety nets that are indispensable in the 21st century?
No one knows when disorders of unknown cause
could strike. Aren't measures against intractable
diseases one of the safety nets that are
indispensable in the 21st century?
The Ministry of Health, Labor and Welfare's committee focusing on measures against intractable diseases compiled an interim report on the day the Diet session was adjourned.
Speaking on the public-funding system to subsidize medical costs of patients with hard-to-cure diseases, the committee reported that the system should be retained even under current tight fiscal conditions. It said there is a pressing need to review the system.
In response, the ministry plans to review the classification of eligible diseases as well as the payment-bearing system which depends on patients' income. Since the ministry is likely to rush and submit a budget request while the Diet is adjourned, I wish to express my opinion.
Thirty years ago, a movement pursued by patients afflicted with Bechet's syndrome, a rare intractable disease, and their doctors aroused public opinion in large measure.
Fifty-five lawmakers of the ruling and opposition parties formed a group focusing on measures against intractable diseases, and a citizen's bill for a ``Fundamental Law on Relief Measures for Intractable Diseases'' was drafted.
The then-Ministry of Health and Welfare, however, deemed the law unnecessary and announced in 1972 an administrative article titled ``Summary on Measures Against Intractable Disease'' that was only 450 characters long. Since then, measures against intractable diseases have been administered as public subsidies without legal grounds.
Due to the financial difficulties of recent years, subsidies without legal basis became subject to reduction. The total, which came to 22.6 billion yen in fiscal 2000, fell to 20.1 billion yen in fiscal 2001 and 18.3 billion yen in fiscal 2002. The uneasiness of having to witness the sum fall by 10 percent each year must be most taxing to patients and their families.
Admittedly, the system, which began when the economy was growing steadily, cannot escape being the subject of reform. Yet intractable-disease patients already share the pain in full measure.
The public system for funding the full medical costs of intractable-disease patients ended in 1998. Today 80 percent of these patients bear part of the costs, which can run as high as 14,000 yen a month in case of hospital admission.
A subsidy of merely 18.3 billion yen, compared to 7 trillion yen in medical costs shouldered by the state, supports 500,000 intractable-disease patients nationwide. Even so, the subsidy does not cover every intractable disease.
Diseases covered by subsidies are selected through an extremely murky process. Nor does the ministry keep track of the various rare intractable-disease patients, who are not eligible and are groaning under the weight of hefty long-standing medical fees.
Disorders of unknown cause, including atopic dermatitis, that could be mirroring distortions in society, are emerging and no one knows when they could strike and who will be afflicted.
Aren't measures against intractable diseases one of the safety nets that are indispensable in the 21st century?
While increasing patients' co-payments and reducing eligible diseases, the Ministry of Health, Labor and Welfare plans to draw up a long-term vision focusing on measures against hard-to-cure diseases to stabilize the system.
This is a re-enactment of the incident 30 years ago when the government used a slapdash policy to deafen the voice of the silent majority calling strongly for legislation of relief measures.
Although the interim report stopped short of mentioning this as a point to be examined, I believe that passing a law specifying the responsibility of the state is most crucial to stabilize the system. Although some say that legislation will reduce the flexibility of the system, I think the problem can be solved by the structure of the law.
Is it possible to persuade the Ministry of Finance with a long-term vision alone? Whether the public-welfare administration is taking the side of the patients and consumers is also being questioned. In addition to a long-term vision on measures against intractable diseases, the ministry plans to establish a new program for the disabled.
It also plans to review, by each department, the relief system for drug-induced disorders, measures for chronic and specified diseases of infants, as well as the nursing-care insurance system. The troughs between the complex and compartmentalized public-welfare administration are wide and deep.
Shouldn't the ministry as a whole formulate a grand design for comprehensive welfare policies in cooperation with other ministries and agencies?
Such a design should comply with each patient's degree of neediness instead of the type, degree or rarity of the disabilities, including intractable diseases.
Furthermore, instead of allotting the task to bureaucrats working in Kasumigaseki, now is the time for lawmakers in Nagatacho to shoulder the responsibility.
* * *
The author is a Minshuto (Democratic Party
of Japan) member of the Upper House. He contributed
this comment to The Asahi Shimbun.(IHT/Asahi:
October 10,2002)