Hamilton family laments lack of funding for costly medication to treat 7-year-old’s rare medical condition

Cena, 7, is seen in this photo at her home in Hamilton. (Submitted)

A Hamilton father says he has hit a brick wall in finding funding to treat his daughter’s rare genetic condition that has left the seven-year-old with limited mobility, deteriorating vision, and difficulty breathing.

In an interview with CP24.com, Ibrahim Hermus said he and his wife and children were living in Turkey when his daughter Cena was diagnosed with proopiomelanocortin (POMC) deficiency at just two years old. The condition is known to cause severe obesity in young children and can lead to adrenal insufficiency.

Hermus said when his family moved to Canada in 2023, he had hoped he would finally be able to provide his daughter with the treatment she requires.

Speaking through a translator, Hermus told CP24 that his daughter weighed approximately 165 pounds when they first arrived in the country two years ago and since then, her weight has jumped to about 220 pounds. He said Cena struggles to attend school and can no longer walk without assistance.

Hermus said a team at McMaster Children’s Hospital in Hamilton has come up with a treatment plan for Cena but the costly drug they prescribed is not something the family can afford.

Documents provided to CP24.com show that the medication she has been prescribed, Imcivree (setmelanotide), comes with a price tag of $300,000 for the first year.

The drug is not covered by the Ontario Drug Benefit program and the family says they haven’t found a suitable alternative.

Doctors at McMaster Children’s Hospital have formally requested that the government fund the drug, but their attempts have not yet been successful, Hermus said.

In an email to CP24.com, the Ontario Ministry of Health, which decides which drugs are covered through the Ontario Health Insurance Program (OHIP+), said more than 5,500 drug products are covered under the program.

“An additional 1,400 drug products are funded by meeting specified criteria through the Exceptional Access Program (EAP),” the statement read.

“For drug products like Imcivree (setmelanotide) to be eligible for funding through Ontario’s public drug programs, the manufacturer must submit a request for the drug to treat a specific indication. The manufacturer has not completed a submission for Imcivree to receive funding for the treatment of pro-opiomelanocortin (POMC) deficiency.”

The manufacturer, Rhythm Pharmaceuticals, has not responded to CP24.com’s request for comment.

“Should the manufacturer wish to make a submission to the ministry via this established process, funding for Imcivree could be considered in the future,” the Ministry of Health’s statement concluded.

Hermus said he is worried that without proper treatment, Cena’s condition will be life-threatening.

He said his daughter’s breathing issues make sleep difficult for her and as a result, he is up with her through most of the night.

Hermus said the condition has taken a significant emotional toll on his daughter and his family. He said Cena doesn’t fully understand why she is different but frequently asks her father when she is going to be able to play outside and wear dresses like the other children she sees at school.

One treatment option doctors have recommended to Cena is weight-loss drug Ozempic. To help pay for the medication, which costs about $400 a month, the family is receiving some financial support from a local charity, Mishka Social Services, which has been fundraising for Cena on the family’s behalf. Raina Mohammed, one of the charity’s social service workers who has coordinating support for the family, said the organization is doing what it can.

She said a GoFundMe page has been set up for Cena and Mishka has been organizing fundraising events. She said a group of neighbours recently reached out and are now fundraising to purchase Cena a walker.

“She is a very sweet girl,” Mohammed said.