OBJECTIVE. To present the management of a patient with rare disease in limited resources facilities based on actual condition in field, compared with the suggested guideline, provided by international use.
CASE. A 8 year old boy came to pediatric outpatient clinic on October 2018 with 2 day fever, gingivitis, abdominal pain and flu-like syndrome. The vital signs are normal, with slight anemia. From laboratories studies, there is pancytopenia. The patient refuse to be given any medication nor to be referred. After the initial visit, patient was admitted to Shanti Graha Private Hospital once and Buleleng Public Hospital once within November and December 2018 for transfusion. The condition worsen, so on February 2019, the patient’s parents finally willing to be referred to Sanglah Public Hospital. The patient got BMA examination and hospitalized for 18 days until he died on March 8th, 2019. According to literature, an immunosuppressive treatment is indicated while doing supportive therapy and finding the underlying disease. However, the funding for small hospital by JKN is not sufficient to do continuous supportive therapy. In case the patient refuse to be referred, we cannot give sufficient supportive transfusion as suggested in guideline, so there is not much benefit given for patients in peripheral hospital unless the patient referred to bigger hospital.
CONCLUSION. JKN program is beneficial for citizen. However, government must review the JKN funding to give a better treatment for patients, especially patients with rare disease in limited resource facilities.