A North Vancouver family is appealing a provincial decision that denied funding for specialized brain treatment in Germany for their nine-year-old son, who is living with a rare and life-threatening condition.
According to a news release, Nathan Hepburn has been diagnosed with a brain arteriovenous malformation — an abnormal tangle of blood vessels — and after exhausting available treatment options in Canada, he underwent the first stage of treatment in Germany in March. The procedure successfully treated approximately one-third of the AVM and eliminated a dangerous aneurysm, but additional procedures are still required.
The family says the province denied its request for out-of-country funding despite support from physicians involved in Nathan’s care. An appeal submitted in May argues that no equivalent treatment is available in Canada.
In recent weeks, Nathan’s case has received additional backing from the BC Nurses’ Union, whose president wrote to the Minister of Health in support of a timely review. According to the news release, letters of support have also been provided by physicians at BC Children’s Hospital and Toronto’s SickKids Hospital.
Nathan’s mother, Natasha Hepburn, a registered nurse, says the family is still awaiting a response to the appeal while working to raise funds for future treatment. “We’ve seen that the treatment is working,” said Hepburn. “Now we’re hoping to secure the support needed to continue it.”
According to the news release, the family has launched a GoFundMe campaign to help cover the cost of Nathan’s ongoing care.
The gvmt spends so muck money on so many strategic, inspirational and wishful projects that have no positive end results, its mind bending that they wouldn’t spend a couple of 100k on an experimental project/procedure to possibly see a child (and mother’s) life saved and learn from that. Sounds like a lot less costly than doing our own research to assess that maybe the procedure works. The German experiment shows it works…what’s wrong with our thinking and investment strategies ?
It is actually an established treatment, not experimental. Transvenous embolization is a neurointerventional procedure that has been performed for years at leading centres in Europe for complex brain AVMs. It is supported by published medical literature and is used when conventional treatments, such as standard embolization, surgery or radiosurgery, are unlikely to provide a cure or are considered too risky.
What is uncommon is not the treatment itself, but the level of expertise required to perform it. Only a small number of physicians in the world have the experience needed to safely carry out this highly specialized procedure. That is why patients across Europe and increasingly around the world, are referred to experts such as Dr.Rene Chapot when this approach offers the best chance at a cure.