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A B.C. mother says she feels defeated by the recent decision from the provincial government to deny funding for her son to travel to Germany for medical procedures.
“I feel numb, I feel defeated, I feel devastated by the decision,” she said.
Natasha Hepburn’s eight-year-old son, Nathan, has been diagnosed with brain arteriovenous malformation, AVM, which is a rare and life-threatening condition where abnormal blood vessels in the brain can rupture without warning. A bleed can cause permanent brain damage or be fatal.
Natasha came across an article by Dr. Rene Chabot, an interventional radiologist in Germany who has pioneered a new embolic agent called Obtura. It works like glue, so anytime a brain is bleeding, they can inject the glue into the blood vessels to stop the bleed or close it off.
“It could save his life, because it’s very different than the embolic agents or glues that we have here in North America,” she said.
“So this doctor, he pioneered an approach called transvenous embolization. And he’s treated these lesions before. He’s treated complex lesions of this nature many times, like 50 times before. And he’s shown me, he’s shown me other cases that were very similar to Nathan’s that he treated effectively.”
Natasha said Chabot told her that he is highly confident that Nathan can be cured with his method.
However, it’s very expensive, about $61,000 each time, and Nathan may need between three and five treatments.
“We’ve gone through so much and we just need this nightmare to be over and now with this treatment, we’ve been given that chance,” Natasha said.
She applied for Out-of-Country Health Funding from the Medical Services Branch, but found out on Monday that the application had been denied.
“When I opened up the email, I can’t even tell you what it felt like, it was a mix of devastation, disbelief and shock,” Natasha said.
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“You know, I thought for sure that when the government reviews Nathan’s case and understands the situation and reads the doctor’s recommendation that this treatment is reasonable and medically justified, and explains why he needs it, I thought for sure that they would support us, that they would help us.”
Part of the reason given for denying funding is “appropriate and acceptable medical care is available in B.C. or elsewhere in Canada,” and, “the medical care or service provided is unproven, experimental, or in the early stages of development.”
Natasha said they have tried everything else already.
“We’ve tried the conventional therapy. We’ve tried embolization here. We’ve tried radiation… Nathan received exceptional care here, but the biology of his AVM, like I said, is different, and he didn’t respond to the treatment.”
Doctors from BC Children’s Hospital and Sick Kids Hospital in Toronto also wrote letters of support for Nathan to travel to Germany to get the treatment, saying they can’t do anything further for him in Canada.
“We already tried the treatment here,” Natasha said.
“The doctors were amazing. They literally tried everything for him. He got the radiation that was recommended. It did nothing. There was no changes to the vascularity or characteristics of his lesion. His lesion literally showed no change whatsoever, and he got the embolization, but, you know, it didn’t work. Treatment didn’t work. And this is the next step that’s being recommended by a team of experts.”
She said her son has a ticking time bomb in his brain.
“It can go off at any time; he could lose his life. This is my child. His life matters.”
Natasha has also started a GoFundMe to try and raise as much money as she can.
Nathan’s grandfather, John Hepburn, Dean Emeritus of Science at the University of British Columbia, told Global News that he doesn’t understand why funding was denied.
“Frankly, there’s several justifications, one of them purely bureaucratic, which is, if something’s not been approved by Health Canada, it can’t be funded by the B.C. government,” John said.
“Which, to me, is strange, because if a treatment’s not available in Canada — in other words, nobody’s qualified to do the treatment — then of course there’s no Health Canada approval. Somebody has to apply for Health Canada approval. So the fact that a treatment is available and is not quite routine, but it’s well-practiced in Germany, is reason enough for the government to say no funding.”
John said the government also called the treatment experimental.
“I was a scientist. I know what experiment means, and generally, it means that you don’t know the outcome. This treatment is well-known. There has been published literature, peer-reviewed public literature. It’s been successful well over 100 times from this one doctor alone,” he added, describing it as a “catch-22.”
“If a treatment is available, a reputable, proven treatment is available outside of Canada, but is not available in Canada, that’s justification for denying funding to go outside of Canada to seek the treatment is the way that I would interpret the catch-22.
“If it’s available in Canada, of course, why would we take a 10-hour flight to Frankfurt, followed by a one-and-a-half-hour train ride to get treatment? I mean, you’d be crazy to do that if you could get equivalent treatment in Canada.”
John said they don’t have any more time to waste.
“We’re counting on, really, the generosity of strangers, because I’m retired, Natasha is a single mom,” he said.
“This is not going to be easy. We are going to do it. I mean, we’re determined to get Nathan the treatment he needs, but it’s not going to be easy. We’re not rich. So we will do what we have to do, and the GoFundMe is helping.”
