Treatment of erythema nodosum leprosum (ENL, type 2 lepra reaction) with thalidomide is an effective alternative to steroid therapy, but Ministry of Health, Labour and Welfare (Japan) has only approved thalidomide (Thaled® Capsule, Fujimoto Pharmaceutical Corp.) for the treatment of multiple myeloma under the Thalidomide Education and Risk Management System (TERMS®) 2008. Then thalidomide was approved for ENL in 2012 by Ministry of Health, Labour and Welfare. Use of thalidomide for patients with ENL has already been established by various studies in other countries, but limited experience in Japan has hindered application of this medication to domestic patients. This led us to devise a guideline on the usage of thalidomide to treat ENL in Japan. Based on TERMS®, we suggest that administration of thalidomide for ENL should be started at 50-100mg/day p. o. before going to bed and then the dose should be adjusted according to the patient’s symptoms, while not exceeding the maximum recommended dose of 300mg/day.
Mycobacterium leprae, the causative agent of leprosy, possesses unique features including inability to proliferate in vitro. In the cellular components of M. leprae, the fate of intracellular metabolites, assumed to be associated with such physiology, remain largely unknown. In this study, we found that amino acid species are significantly accumulated, while most of intermediates related to central carbon metabolism markedly decreased, in the intracellular metabolite fraction of M. leprae, as compared with that of other mycobacteria. Our results show the unique metabolite dynamics of M. leprae for the first time and these insights might contribute to understanding the physiological characteristics of leprosy.
This paper explores the current status of preserving medical/patient records in Japan and providing them for public use, focusing in particular on issues relating to the medical records preserved in Hansen’s disease sanitaria, as per Japan’s present laws concerning official documents (in particular, the “Public Records Management Act” enacted in 2009) and those on personal health information. First, I introduce the basic approach to archival practice developed as a global standard—including the difference between “institutional archives” and “collecting archives”—as a theoretical background for the preservation and application of the medical/patient records and materials kept in Hansen’s disease sanitaria in Japan. Second, I explain how around the world scholars of the social history of medicine increasingly recognize that the demand for medical/patient records and their value is both the basis for and evidence of the growing trend for research into the “history of patients”. Medical/patient records that have been made and stored in each sanitarium in Japan would have many potential users if they became properly available for historical research and other activities. Lastly, this paper proposes some solutions to the problematic points of using medical/personal records for historical research—issues concerning privacy, research ethics, and reproduction of stigma—that are applicable to medical/patient records of Hansen’s disease sanitaria in Japan.
This essay presents an overview of the collection, management and uses of historical documents at Kikuchi Keifūen, one of National Sanatoriums of Hansen’s Disease. It also suggests that the creation of a regional archive for the documents will encourage both academic research and societal use of the documents.
Since its opening in 1909, Kikuchi Keifūen has amassed a large number of documents. So far about 30,000 historical documents have been collected at the Social Exchange Hall and History Museum.
Some materials have been used in academic works by historians. Others have been used in educational outreaches. A particularly important outreach was organized in 2016 as an educational workshop for four students of Kumamoto University. The students read historical documents, conducted oral interviews with the residents, and finally replicated a scene from one of the court cases in which the patients were involved. This scene was exhibited at Kikuchi Keifūen from the winter of 2016 until the summer of 2017.
The academic studies of the documents and the uses of the historical materials suggest that the idea of the regional archive, in which the historical documents will be kept and managed at the site of the life of the patients and ex-patients, is a good starting point. The idea will secure the resources easily and will develop further interactions, which will establish monuments for the lives and the memories of the ex-patients.