OTTAWA -- An Ottawa family is in a desperate bid to try and save their son’s life, after their application for cancer treatment in a clinical trial at the Children’s Hospital of Philadelphia, was rejected by the Ontario government.
“It would get him a cure, this is the only hope that doctors feel that is left to get him cured,” said Jacob Deforge’s mother Telma.
Diagnosed in 2017, Jacob has been weakened by years of chemotherapy and radiation that has not worked. The cancer keeps coming back.
“It’s just been hard. We almost get there then have to go back to the beginning”, said Jacob.
“I don’t think we should put a price tag on his life. This might be our last Christmas together”, said Telma Deforge.
The standard treatment of radiation and chemotherapy has not worked. Jacob is a candidate for a treatment called Car T-cell, where his own lymphocytes are extracted, genetically modified, and returned to his body. Sick Kids Hospital in Toronto does provide this treatment, but Jacob is too weak to have his own lymphocytes extracted.
The family is pushing to participate in a trial study at the Children’s Hospital of Philadelphia, which uses a donor’s lymphocytes, instead of the patient’s. Jacob’s family applied for money to receive the treatment in Philadelphia, but the Ministry of Health rejected the application.
Jacob's doctors at CHEO believe he might benefit from the Philadelphia treatment.
The family estimates the cost of treatment will be at least $800,000 U.S.
“We made the application, because this treatment is considered on paper a phase one trial. The ministry of health has denied our application to get us to Philadelphia,” said Telma.
For its part, a Ministry of Health spokesperson said in a statement, to qualify for funding in a foreign country, the treatment must meet several criteria, and this one so far does not.
The treatment must be: “Generally accepted by the medical profession in Ontario as appropriate for a person in the same medical circumstances as the insured person”, wrote David Jensen with the Ministry of Health.
In short, the treatment in Philadelphia may be too early in the testing stages to qualify for funding under OHIP.
The DeForge’s and their doctors have appealed this decision, but they feel time is running out for Jacob.
They have started a Go Fund Me page to help pay for Jacob’s treatment in Philadelphia.