A Saskatchewan family is again calling on the provincial government to help fund their daughter’s potentially life-saving medication.
Nearly two years ago, doctors found three life-threatening and what are believed to be non-cancerous tumors on Emilie Samson’s brain stem and spinal cord. The tumors are inoperable, and radiation has been unsuccessful.
Last year in December, the 19-year-old began a medication called Belzutifan, which costs about $21,000 a month. Since she’s been on it, she’s seen improvements, but it’s too soon to tell if that’s due to the medication.
“She [has] been able to move around a little bit more with a walker. Things have definitely improved,” her father, Noel Samson, told CTV News.
The Samson family says they want to continue with the medication, which isn’t being funded by the province, and they listed their house for sale to help cover some of the medical costs.
“We don’t know where to turn anymore,” Emilie’s mother, Michelle Samson, said.
“It feels like this government like they’ve turned their backs on us,” Noel said.
The Samsons say they’ve considered going to the Mayo Clinic, a private medical centre in the U.S., but they didn’t have the funds.
“We’re torn between paying for this medication or going down there, because we’re looking at close to $20,000 for that trip with the cost of everything. And that’s one month’s supply of this medication for her. So, we’re gambling with the little money we have left,” Noel said.
In a statement to CTV News, the Ministry of Health says it can’t comment the specifics of this case, but says the key requirement for coverage of out-of-country medical treatment is that the services aren’t available in Canada’s publicly funded health-care system.
It also says the treatment must be considered the standard of care, not experimental or part of a clinical trial.
For the Samsons, it’s another blow to their efforts to get their daughter the help she needs.
They say they’re exhausting all of their options and won’t stop until they’ve done all they can.
“If something does happen down the road that’s out of our hands, then well, we’ve done everything we can,” Noel said.
“We can’t just sit and do nothing. We have to fight for her,” Michelle said.
