An Okotoks mother is one of many Canadians pushing for the hemophilia treatment "Hemlibra" to be made available across Canada.
Andrea Radke, whose 9-year-old son Nicklas receives treatment for severe hemophilia, is encouraging others to join in a letter-writing campaign to bring awareness to the treatment.
The rare disorder, believed to affect around 3000 Canadians, prevents the blood from clotting, meaning minor cuts can lead to serious medical issues, and often causes internal bleeding seemingly at random.
Nicklas' diagnosis meant he was no longer able to participate in team sports like hockey, and that special care has to be taken to ensure he has proper supports at school.
Radke says Hemlibra differs from the prophylactic care typically prescribed for hemophilia patients in several ways, including the way it's administered and the processes in which it reduces the effects of hemophilia.
She says patients have experienced much better outcomes after transitioning to Hemlibra, which has been subsidized in several European countries, the U.S. and Australia.
The common treatment sees patients receiving an infusion every few days intravenously, whereas Hemlibra is typically administered once weekly in a manner similar to diabetes treatments.
Radke says Nicklas receives intravenous infusions every three days, which has been intrusive and challenging.
"Physically, it's probably not that hard, but it's very hard psychologically. he was dealing with a severe needle phobia when we started treating him, and we had to go to the children's hospital to use their psychological services to get him over his needle phobia."
Hemlibra also reduces the number of internal bleeds experienced by patients. Frequent internal bleeding often leads to individuals requiring joint replacements as well as the onset of severe arthritis at an early age.
Health Canada has approved the use of Hemlibra hemophilia patients, though Quebec's committee for evaluating health technology, INESSS, recommended the treatment not be funded in the province.
The move was met with backlash from the Canadian Hemophilia Society, as well as all four of Quebec's hemophilia treatment centres, who cosigned a letter to the province's minister of health, requesting for the treatment to be approved and funded on a provincial level.
Radke says the choice not to fund the treatment seems short-sighted and focused only on the immediate financial implications.
"They don't really include the long-term financial benefits, because patients that would get Hemlibra would spend way less time in the hospital, they would have way less time off work and school because of the effect of the treatment."
The letter from the Canadian Hemophilia Society has been made available on their website for those wishing to send one to their province's health minister and local MLA.
Radke is encouraging fellow Albertans to do so and to bolster the voices of the relatively small number of families affected by hemophilia.
"Because we are just a small number of people, we need the public to speak up for us and make our voices heard so we can ask the province, with a loud voice, that we need this help and we need this treatment."
She says the difference it makes is immeasurable.
"Honestly, it's such an increase in quality of life, and less bleeds, it's incredible. It's not really measurable in money for the patients, right?"
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