06242017Headline:

Family fights for funding to treat daughter’s rare condition — St. Albert Leader

“Because [Naglazyme] doesn’t have federal approval, the options for funding this drug are different than for some other drugs. … [The Short-term Exceptional Drug Therapy Program] relies on medical experts to assess whether a specific drug will be safe and effective for a specific patient. It’s done on a case-by-case basis, so it can take a patient’s needs and particular health condition into account.”

Helping the Sadownyks fight their battle is the Isaac Foundation out of Ontario, headed up by Andrew McFadyen, whose son Isaac was also diagnosed with MPS VI in 2006 when he was 18 months old. He has been receiving Naglazyme treatment for about seven years and is doing “extremely well,” his dad said, and that has inspired him to help other families get the treatment they need.

“When Isaac was diagnosed, we were told there was a treatment available, but we were told by our physician, ‘Don’t even think about it because you’ll never get it here in Canada,’” McFadyen said. “For us, the only thing we could do is fight for our child, so that’s what we did. We made sure we could bring it to Canada, then we made sure we could deal with the bureaucrats to get it funded in Canada. From that, there was precedent set.”

McFadyen has helped families fight for Naglazyme funding in British Columbia, Saskatachewan and Quebec. But dealing with the Alberta government has been frustrating.

“It just seems kind of silly that a group of bureaucrats are going to sit down in a room again and review the same data and make a decision on the fate of this little girl based on what they do or do not know about the drug,” he said.

While the Sadownyks would like to get Aleena started on Naglazyme as soon as possible and say it “means the world” to have someone like McFadyen on their side, there is no set timeline for a decision from the provincial government.

“As a politician, I don’t get directly involved in assessing which drugs would be funded through that process — and appropriately leave that assessment to medical experts,” Horne said in his statement. “Department officials will continue to support the application process, a clinical review is underway now and I understand we expect a response soon.”

Meanwhile, Dane is holding out hope that treatment can begin as soon as possible.

“We have more hope now than if we were trying to navigate this on our own,” he said. “Having said that, I’ll never feel completely satisfied as a parent until the day comes and we can take her in for those treatments.”

— GLENN COOK, St. Albert Leader

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