A survey on all patients with intractable diseases was conducted in a local administrative region (municipal region) for the purpose of understanding what percentage of patients receiving financial aid for treatment with intractable diseases was covered under the financial aid for treatment for intractable diseases and for gathering information on the actual medical situation of the beneficiaries of this system. The results of this survey are summarized as follows; 1) The medical costs of 66.5% of the 209 patients were covered under the medical assistance system for intractable diseases (Beneficiary Group), while the medical costs of the remaining 33.5% of the patients were not (Non-beneficiary Group). 2) As a result of the assessment of characteristics of both the Beneficiary Group and Non-beneficiary Group, there were differences between the groups with regard to health problems, needs for public health service, medical care or welfare. The patients in the Beneficiary Group were likely to be affected by shorter period of diseases and more than half of them could lead maintain almost normal lives. The patients in the Non-beneficiary Group were likely to be affected by the diseases for a longer period and more than half of them required daily assistance by other people or mechanical ventilation and had needs for public health service, medical care or welfare. 3) Today, the number of patients with intractable diseases is grasped only through applications for various medical assistance systems by administrative institution. The results of this survey suggest that the collection of such information by one administrative institution is possible for only two-thirds of the patients with intractable diseases. These results suggest that cooperation among public health service institutions, medical institutions and welfare institutions is essential for tracking down the non-beneficiaries of the medical assistance system for intractable diseases, which is requried for the collection of accurate information on patients with intractable diseases.
