Petition filed urging expedited reimbursement of Livmarli

GC Biopharma’s imported orphan drug

Approved in February 2023... 136 patients in Korea as of 2021

A national petition has been filed to urge for the health insurance reimbursement of Livmarli (maralixibat), which is used to treat pruritus (itching) in patients with Alagille syndrome.

 

The petition period runs until the 12th of next month, with over 1,600 signatures signed as of the 16th.

 

Alagille syndrome is a condition in which the intrahepatic bile duct becomes significantly reduced in number (bile duct paucity), preventing bile from being excreted from the liver.

 

This leads to its accumulation in the liver and is often accompanied by complications affecting the cardiovascular system, skeletal system, eyes, and skin.

 

The drug is indicated for “biliary pruritus in patients with Alagille syndrome aged 1 year or older,” in Korea, and is imported by GC Biopharma.

 

Livmarli is the first treatment in Korea for pruritus in patients with Alagille syndrome and is expected to be of great help to patients suffering from itching skin and other symptoms.

 

According to data from the Health Insurance Review and Assessment Service, as of 2021, there are 136 patients with Alagille syndrome in South Korea.

 

Livmarli obtained domestic marketing approval in February 2023, but it is not yet covered by health insurance.

 

A petitioner who identified herself as Kim, a mother of a child with Alagille syndrome, wrote that her child is receiving treatment at Severance Hospital but is facing difficulties in treatment due to the lack of health insurance coverage for Livmarli.

 

Kim explained that medical staff suggested participating in a clinical trial for another treatment, Bylvay Cap (odevixibat), but that this was not possible due to the child's young age.

 

She added that there is a medical necessity to prioritize the use of novel drugs over liver transplantation for infants who have passed their first birthday and that the medical staff recommended Livmarli as an effective treatment option for such.

 

This is why Kim launched a petition calling for the immediate reimbursement of Livmarli.

 

Kim said, “The itching and skin damage (caused by Alagille syndrome) are destroying my child's daily life,” adding, “Xanthomas are not merely a cosmetic issue, but a serious indicator of how much bile and fat are accumulating in the body.” “For such a young child like mine, the opportunity and choice to alleviate symptoms with medication rather than undergoing a major surgery like a liver transplant is desperately needed.

 

Rare diseases are not something families can face alone.

 

It's heartbreaking that treatments exist but must be given up simply because they are not covered by insurance.”