'It would change everything': Parents of 2 boys with hemophilia push for new drug to be funded

A P.E.I. family is pleading for health officials from across Canada to agree to fund a hemophilia drug called Hemlibra, citing how it would change the life of people like their two young sons

Declan and Tristan McNeely have severe hemophilia A — a bleeding disorder that leaves their blood unable to clot properly. 

"They basically don't have a clotting level, so if they start to bleed, essentially they can't stop bleeding on their own," said their father Donovan McNeely during an interview at their South Granville home. "We're constantly telling them they need to slow down and stop doing particular things that little kids want to do."

Donovan and Jenn McNeely say access to Hemlibra would change their lives, since the boys currently get needles between three and seven times a week that must be administered into a vein.

It's a huge part of our life. It basically, at this point, is our life.- Donovan McNeely

Tristan in particular hates the needles. 

"It's a huge part of our life," said Donovan. "It basically, at this point, is our life."

Hemlibra would be a simpler injection that would last much longer -- for a couple of weeks. 

"It would make our lives incredibly different," Donovan said. "It would just be amazing [for] their quality of life, and I mean for us too … it would change everything for us."

He said the family has reached out to MLAs across the province, the health minister as well as hematologists in Halifax. "We've basically taken every avenue that we can think of to get this added."

National decision needed

CBC News reached out to the P.E.I. government for comment on funding Hemlibra. 

A statement issued by the office of Health Minister Ernie Hudson late Wednesday said the province can't go it alone. 

"Hemlibra falls under the jurisdiction of Canadian Blood Services (CBS) and decisions about its coverage are made by CBS member provinces and territories as a body," the statement said. "After reviewing the information to-date, my department and I intend to support the recommendation by Canadian Blood Services."

A virtual meeting is expected "over the summer" at which provincial and territorial representatives will confirm their recommendations, the statement said. 

The Canadian Hemophilia Society says that decision can't come too soon. 

"There's no access at all in Canada for this product right now," said David Page, the group's national director of health policy, who points out that the new treatment costs about the same as current products. 

"They've been waiting two years for this. Canada has lagged behind the rest of the world... It's become the standard of care in many countries."

Posted about anguish of treatment

Jenn and Donovan McNeely recently posted on social media to tell people about how difficult the current treatments are for hemophilia.

Donovan said that during a recent treatment, six-year-old Tristan, "who has a lot of fear and anxiety around needles," had to be pinned down by two adults while he screamed. 

"Like I said in my Facebook post, we essentially have to torture our own child to give him his life-saving medication," he said. "There's a certain trauma that comes with being held down to be medicated and we would rather see them have the best chance at life."

Jenn McNeely agreed that having Hemlibra would change the children's lives, and that they're hoping it'll be available to them any day now. 

"We're completely blown away by the people who've responded to Donovan's post, and then I put up a post as well just kind of from my point of view," she said. "It's been really, really heartwarming to see.

"For me, the most important thing that I want people to understand is that these are little boys that just want to be little boys and it would be amazing to see it improve lives. Lots of lives." 

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