Ilaris reattempts reimb for its 13 patients in Korea

Novartis Korea's hereditary periodic fever syndrome treatment

Recently applies for reimbursement after failing to pass DREC review in 2017

Demonstrated to improve quality of life in patients with Hereditary Periodic Fever Syndromes in clinical trial

‘Ilaris,’ an ultra-orphan drug indicated for only 13 patients in Korea, is reattempting to be listed for insurance benefit.

 

According to industry sources, Novartis Korea recently submitted an application to receive insurance benefits for its hereditary periodic fever syndrome treatment ‘Ilaris (canakinumab).

 

This is the first attempt made by the company since it was denied reimbursement by the Health Insurance Review and Assessment Service’s Drug Reimbursement Evaluation Committee in 2017.

 

Among the various Hereditary Periodic Fever Syndrome conditions, the drug was approved in 2015 in Korea for the treatment of ▲Cryopyrin-Associated Periodic Syndromes (CAPS), ▲Tumor Necrosis Factor-Receptor Associated Periodic Syndrome (TRAPS), and ▲Hyperimmunoglobulin D Syndrome (HIDS)/Mevalonate Kinase Deficiency (MKD) and ▲Familial Mediterranean Fever (FMF) in patients who are unable to use colchicine (due to contraindication, intolerance or lack of efficacy).

 

The drug demonstrated an improvement in quality of life and convenience in administration in CAPS patients (a type of Hereditary Periodic Fever Syndrome) with 6 doses a year but was unable to prove its cost-efficiency, being a drug for an ultra-rare disease.

 

In fact, Novartis had first applied for its reimbursement in 2017 after the drug was approved in 2015, and the company did not make any further attempts at listing until now.

 

With this delay, the dire need for a reimbursed treatment option has intensified among patients.

 

An alternative option exists, but just for one phenotype of the Hereditary Periodic Fever Syndrome - the chronic infantile neurological, cutaneous and articular (CINCA) syndrome – that patients can receive through the Korea Orphan & Essential Drug Center.

 

With expectations rising on increased coverage for severe and rare disease drugs with the inauguration of the new administration, whether Ilaris will see different results this time remains to be seen.

 

Dae Chul Jeong, Professor of Pediatrics at Seoul St.

 

Mary's Hospital, said, “We need to improve accessibility to rare disease treatments so that Hereditary Periodic Fever Syndrome patients are guaranteed the same treatment benefits as other rare disease patients in Korea.” He added, “We also need to provide social attention and support so that patients diagnosed with Hereditary Periodic Fever Syndrome could continue on their difficult treatment journey while maintaining the quality of life with their families.”