The family of a B.C. boy living with a rare and life-threatening condition is pleading with the province to fund out-of-country treatments.
Natasha Hepburn’s nine-year-old son, Nathan, has been diagnosed with brain arteriovenous malformation (AVM), which is a rare and life-threatening condition in which abnormal blood vessels in the brain can rupture without warning.
“It’s like a leaky pipe. It is only gonna leak and leak and leak before it bursts,” she told Global News. “I’m just pleading with the government to please allow my child a chance to complete his treatment before a preventable tragedy occurs.”
After exhausting all treatment options in Canada, Hepburn found a leading specialist in Germany.
In March, the province denied the out-of-country funding request, but Hepburn and Nathan were able to go to Germany anyway thanks to an online fundraiser, which covered the cost of the $70,000 procedure.
Nathan continues to receive community support and the online fundraiser has grown enough to pay for the second treatment, which is scheduled in August.
But funding for subsequent treatments – which could be two to four – remains in limbo.
“I can’t sleep at night knowing treatment may be delayed because of funding,” Hepburn said. “It’s unconscionable to allow a child to suffer when an effective treatment exists, and he could be cured.”
Nathan showing improvements
Immediately after the March procedure, Nathan suffered temporary paralysis on his left side.
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He was able to recover quickly and his condition has noticeably improved, according to his mother.
“It’s already working. His headaches have reduced. He’s falling less,” she said.
Nathan is being treated by Dr. Rene Chapot, an interventional neurologist from Alfred Krupp Krankenhaus Centre in Essen, Germany.
Dr. Chapot said he has performed nearly 1,000 procedures through the vein and has about 200 AVM patients.
He said the risks of leaving the AVM untreated are far greater than the risks associated with the procedures.
“It’s about life and death,” Chapot said. “If we wait for too long, we see that the AVM aspirates all surrounding vessels, and he is at an age where we see AVM grow.”
Overflowing community support
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Nathan’s neurosurgical teams at BC Children’s Hospital support the treatment in Germany.
His local mayor, the BC Nurses’ Union, Canadian Health Coalition, Canadian Organization for Rare Disorders and BC Health Critic Anna Kindy have all written letters of support urging funding.
“Nathan exemplifies the case, for me, of somebody with a rare disease that’s accessed everything available in Canada, and it’s failed,” Kindy told Global News. “There is treatment outside our borders that is actually successful and if we have a strong universal healthcare system, we need to also take care of the people with rare diseases.”
Funding review underway
The health ministry confirms it is undergoing a Stage 2 review of the case and will notify the family once a decision has been made.
“When reviewing requests for out-of-country funding, the Ministry relies on the clinical expertise, recommendations, and supporting documentation provided by the patient’s treating specialists under established funding criteria,” it said in an emailed statement.
It previously rejected the request, citing it does not grant funding for medical care that is “unproven, experimental, or in the early stages of development.”
But Kindy said it is incorrect to categorize Dr. Chapot’s treatment as experimental.
“This is proven treatment. But because it’s difficult, there’s only a handful of people worldwide that are able to do it,” she said.
With no timeline for when a funding decision is made, Hepburn is growing increasingly concerned about the “ticking time bomb” in Nathan’s brain.
“I am worried that a preventable tragedy will occur, and then there’s going back,” she said.
Imagine a government that claims to care for its people. Yet look at a mother having to beg the government to help save her son.
This should be a no brainer.
Our government doesn’t care about us, only money and power.
If this condition is rare, why doesn’t the German doctor allow this treatment to happen anywhere it’s required…greed?
Go to another country for health care? But everyone says Canadian health care is the best in the world!
“ Immediately after the March procedure, Nathan suffered temporary paralysis on his left side.”
And then he Recovered?!?
Oh Really??
Odds of long term survival are what?
Sorry but an extended family member can’t get a simple cheap scoliosis treatment due no funds or waiting lists.
Sorry but give people will can contribute back to society long term the front of the line .
Odds are what??