Korea will increase the number of regional hospitals providing care for rare disease-suffering patients from four to 11 this year.
The Korea Centers for Disease Control and Prevention (KCDC) said it would begin the national project to support patients with rare diseases as announced in September last year.
KCDC has been collecting various opinions through surveys and public hearings for policy support for rare disease patients. The health authorities learned that it took much time and cost for such a patient to receive a diagnosis because most medical institutions were concentrated in Seoul area.
They were aware that patients with rare diseases also found it difficult to receive continued treatment after a diagnosis.
According to KCDC, 64.3 percent of all the rare disease diagnoses were made within less than a year. However, 6.1 percent took more than 10 years, and 16.4 percent came only after more than four visits to four different hospitals.
To address the issue, KCDC said it would boost the role of “rare disease base center” as well as their numbers. The agency said it would newly designate a central support center and increase the number of regional base centers from four to 11.
KCDC selected Seoul National University Hospital as the central support center. The other 10 regional base centers are Inha University Hospital, Ajou University Hospital, Chungnam National University Hospital, Chungbuk National University Hospital, Chilgok Kyungpook National University Medical Center, Inje University Busan Paik Hospital, Pusan National University Yangsan Hospital, Chonnam National University Hwasun Hospital, Chonbuk National University Hospital, and Cheju Halla General Hospital
The central support center for rare diseases will provide technical support for the rest 10 base centers so that they can actively carry out tasks such as diagnosis of rare diseases, research, education, training, and patient registration.
The 11 base centers will provide comprehensive services for patients with rare diseases and their families by operating a local special clinic, training medical professionals, and building a network for cooperation in patient care.
KCDC said its program would shorten the period for diagnosis, decentralize medical institutions from the Metropolitan area, and help patients with rare diseases living in provinces to receive continued treatment within their community.
The government will also support genetic testing for patients who are suspected to have an extremely rare disease and subsidize examinations for 87 diseases. Even when hospitals fail to identify the cause or the name of a disease, the base centers will help provide diagnosis and appropriate treatment through additional in-depth tests and genetic tests of the family, KCDC said.
“Although there are many kinds of rare diseases and most of the symptoms are serious, we have had limitations in diagnosis, treatment, and management because of the small size of provincial hospitals or lack of their competence,” KCDC Director Jeong Eun-kyeong said.
With the expansion of the base centers, the center expects that hospitals’ capacity for rare disease diagnosis and quality of medical service will improve. The designated base centers will contribute to enhancing patient convenience and access to medical care, she added.