Late Diagnosis to Limited Therapy, Indonesia's Challenge in Managing Childhood Epilepsy

JAKARTA - The treatment of epilepsy in children requires a comprehensive approach, ranging from proper diagnosis, continuous therapy, to adequate environmental support. However, in practice, these efforts still face various obstacles, both from the health service and public understanding.

Professor of Pediatrics and Neurology at the Faculty of Medicine, University of Indonesia, R.A. Setyo Handryastuti, assessed that the treatment of childhood epilepsy in Indonesia is still faced with a number of major challenges. Starting from the limitations of expert personnel, access to diagnostic and therapeutic services, to the social stigma that still persists.

According to him, this access inequality has the potential to cause delays in diagnosis and suboptimal therapy. This condition can ultimately increase the risk of cognitive developmental disorders in children.

He also highlighted the limitations of supporting facilities, such as magnetic resonance imaging (MRI) equipment. In Indonesia, its availability is still around 1.11 units per million people, far behind countries such as Japan and the United States.

In terms of treatment, access to new generation antiepileptic drugs is also not fully affordable. Some types of second and third generation drugs are not fully covered by BPJS Kesehatan, making it difficult for patients who need combination therapy, especially in cases of epilepsy that are difficult to control.

In addition to medical factors, the social aspect is also a challenge in itself. The term "ayan" is still often used with negative connotations. About half of the families of children with epilepsy are reported to still feel stigma, even though public understanding is slowly shifting from a supernatural view to a medical approach.

To overcome this, Prof. Handryastuti proposed a number of strategic steps that emphasize cross-sector collaboration. This approach not only focuses on technology, but also involves health workers, educators, governments, and the community.

One of the proposed steps is to strengthen the role of pediatricians and general practitioners through task-shifting policies accompanied by training, including the use of instruments such as the Indonesian Pediatric Epilepsy Questionnaire (INA-PEPSI).

In addition, the utilization of teleconsultation and the improvement of continuous medical education are also considered important, through seminars, training, to fellowship programs facilitated by the Ministry of Health of Indonesia. Other efforts include expanding diagnostic access with the provision of portable EEG devices and more equitable distribution of medicines at various levels of health services.

In terms of public education, the role of communities such as the Indonesian Children's Epilepsy Care Room is also considered crucial, including through awareness campaigns such as Purple Day. At the same time, the government is expected to strengthen the implementation of the National Guidelines for Medical Services (PNPK), expand infrastructure, and build a national epilepsy registry system.

He emphasized that every child with epilepsy has the right to equal health services, without exception, including in remote, leading, and outermost areas.

"No child with epilepsy should be left behind in getting services. Treatment must be integrated from health centers to the level of the main hospital, from Sabang to Merauke. With the support of digital technology and human resource development, equitable access can be realized," he said.