Hamilton’s father says he found funds to treat his daughter’s rare genetic condition and hit a brick wall.
In an interview with CP24.com, Ibrahim Hermus said he, his wife and children lived in Turkey when his daughter Cena was diagnosed with Propiomelanocortin (POMC) deficiency at just 2 years old. This condition is known to cause severe obesity in young children and can lead to adrenal failure.
Hermus said when the family moved to Canada in 2023, he hoped that he could ultimately provide his daughter with the treatment he needed.
Speaking through a translator, Hermus told CP24 that her daughter weighed about 165 pounds when she first arrived two years ago, and since then her weight has jumped to about 220 pounds. He said that Cena struggles to attend school and could no longer walk without assistance.
Hermus said the team at McMaster Children’s Hospital in Hamilton came up with a treatment plan for Cena, but the costly medication they prescribed was not something that the families could buy.
Documents provided to CP24.com show that the medicine she was prescribed, Imcivree (SetMelanotide), has a price tag of $300,000 in its first year.
The drug is not covered by Ontario’s drug benefits program, and families say they have not found a suitable alternative.
Doctors at McMaster Children’s Hospital have formally requested the government to fund the drug, but their attempts have yet to be successful, Hermus said.
In an email to CP24.com, the Ontario Department of Health has determined which drugs are covered through the Ontario Health Insurance Program (OHIP+), with over 5,500 drugs being covered by the program.
“An additional 1,400 drugs are funded by meeting the criteria specified through the Exceptional Access Program (EAP),” the statement read.
“Because medicines like Imcivree (SetMelanotide) are eligible to be funded through the Ontario Public Drug Program, manufacturers must submit a drug request to treat certain indications.
The manufacturer, Rhythm Pharmaceutical, has not responded to a request for comment from CP24.com.
“Manufacturers can consider Imcivree’s funds in the future if they wish to submit to the ministry through this established process,” the Ministry of Health’s statement concluded.
Hermus said he is worried that Cena’s condition could be life-threatening without proper treatment.
He says that his daughter’s breathing problems make it difficult for her to sleep, and as a result, he says he will be with her throughout most of the night.
Hermus said the condition is a serious emotional toll on his daughter and his family. He says that Cena doesn’t fully understand why she’s different, but frequently asks her father when she can play outside and wear a dress like the other kids she sees at school.
One treatment option that doctors recommend to CENA is weight loss medication Ozempic. To help pay for the drugs that cost around $400 a month, the family receives financial support from local charity Mishka Social Services. Raina Mohammed, one of the charity’s social service workers who coordinated support for families, said the organization is doing what it can.
She said the GoFundMe page is set up for Cena and Mishka is holding a fundraising event. She said a group of neighbors recently reached out and are now running a fundraiser to buy Cena a Walker.
“She’s a very sweet girl,” Mohammed said.
