Kitchener family says their 10-year-old needs life-saving drug that cost $600,000

Like many young girls, Raneem loves to be around her friends and family but unlike most – she needs a lifesaving medication.

Raneem, 10, lives with a neurological condition and liver disease and needs Cholbam, a medication, for a longer and healthier life.

According to her doctors, that medication is not currently covered by OHIP and comes with a price tag of around $600,000 USD per year.

Raneem lives in Kitchener under the care of Sunbeam Community & Developmental Services. 

“It’s really a life changing option for Raneem but unfortunately it’s not currently covered,” said Sunbeam’s CEO Brian Swinson, when talking about Cholbam.

According to Raneem’s doctors, Cholbam is the best medication to help prolong her life. It could also help stabilize her enough for a needed liver transplant.

Her dad, Yousef Alzoubi, told CTV News that he doesn’t wish this situation on anyone and that he just wants the best for his daughter.

“We are waiting for this medication for a long time and the government cannot afford it to us so this is a call to all people, we need this help, we need this for my daughter,” said Alzoubi.

Erika Gardiner is the nurse manager at Sunbeam.

“Every child deserves a happy and healthy life and to be able to access the drug without a financial burden would give her just that," said Gardiner. 

The family, who lives in London, must travel back and forth to visit Raneem. With the medication, she could potentially live at the family home.

“For the last three years she has been away from us. She is here in the centre. Our hope is to be among us, among our family, living with us,” said Alzoubi.

For now, the family and her doctors will wait for the province to review the drug for coverage.

CTV News contacted Ontario Health Minister Sylvia Jones and Mirum Pharmaceuticals, the company who produces Cholbam, but we did not hear back by publication.