Medical aid program for chronic pediatric diseases of specified categories in Japan: Current status and future prospects

Background: In 1974 the Medical Aid Program for Chronic Pediatric Diseases of Specified Categories (MAPChD) was established in Japan, and the national registration of MAPChD beneficiaries was initiated in 1998. In 2005, MAPChD became legal. The purpose of the present study was to analyze the newest registration data and discuss the future prospects of MAPChD. The differences in MAPChD content before and after legislation were compared. Methods: The subjects were MAPChD-registered patients whose guardians had signed a consent document for the children to join a MAPChD research program during the fiscal years 2002-2003. The nationwide electronic registration data were gathered and analyzed, and the official documents about MAPChD were reviewed and summarized. Results: Given that the overall population was aged 0-19 years, there were four MAPChD beneficiaries for every 1000 children in Japan. Moreover, the prolonged survival of MAPChD patients was accompanied by an increasing prevalence of complications. The percentages of MAPChD beneficiaries who did not sign a consent document for research were 3.1% and 6.3% in 2002 and 2003, respectively. Following the legislation, both inpatients and outpatients younger than 20 years with any of 514 chronic diseases became eligible, and MAPChD began providing welfare services to these patients. Conclusions: The establishment of a MAPChD database is necessary for further research. It is expected that, in future, more beneficiaries of MAPChD will join the research program. One of the major challenges faced by long-term survivors of childhood MAPChD diseases is making the transition from a specialized pediatric care facility to an adult health care system.