An Alberta mother is desperate for access to a medication she says changed her life.
Sylvan Lake resident Michelle Oursov, 22, spent nearly nine months in hospital fighting leukemia, but says the antiviral medication Pritelivir allowed her to finally return home to her family
“It gave me my life back,” she said. “It was honestly the best days of my life, that short week I had home before I was readmitted.”
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Oursov says she can no longer access the medication that was working so well for her.
“Its really heartbreaking because after being discharged from the hospital all I want to do is be home with my son, my family – and that’s just not possible.”
Oursov is constantly battling secondary infections including HSV, which can cause severe outbreaks for the immunocompromised.
Oursov says her skin was ripped open for months, causing pain so extreme she required opioids.
That all changed after her doctor put her on Pritelivir, but they could only get the trial drug for one month.
“She’s unable to take this medication now, and she back and forth to the hospital,” said Oursov‘s older brother Arseni. “She’s back on a toxic medication that’s affecting her kidneys and liver. It’s frustrating.”
Pritelivir is not yet widely available anywhere.
It was created by German company AiCuris, and is in the third phase of trials.
The United States FDA granted it fast-track designation in 2017 and breakthrough therapy designation in 2020.
A Canadian clinical trial is underway, but Health Canada says the decision to seek authorization lies with the drug manufacturer.
“If clinical trials prove the drug’s benefits are greater than its risks, the drug company can apply to Health Canada for approval to market that drug,” said a statement from Health Canada.
“The decision to seek market authorization of a drug is at the discretion of the manufacturer. Health Canada cannot compel a manufacturer to supply or market a drug in Canada.”
CTV News asked AiCuris about its plans and timeline for Canada.
A statement from the company said Pritelivir is still under clinical development and not yet commercially available.
“We are unable to disclose any additional information about future potential market entries at the moment,” it said.
Oursov and her family are upset that the solution they finally found is out of reach.
Oursov says she is resistant to several treatments, so will have to go back on Foscarnet, which impacts her organs and can only be given through IV in a hospital because it requires constant monitoring.
Even with this treatment, Oursov had severe outbreaks and needed opioids for her pain.
“I can’t be alone with my son when I take opioids.” she said. “It’s just heartbreaking that I need to rely on a pain medication for quality of life, when there’s a medication out there I can take that will stop these outbreaks.”
Since sharing her story online, Oursov says she’s connected with many other Canadians in similar scenarios
“It’s important that Canadians and everyone can get the medications they truly need,” she said.
Oursov says her doctor is trying to get her another two weeks worth of Pritelivir, but there is no word on when it might be available or if she can get more after that.
