Chris Selley: Canadians discover (again) the sometimes deadly calculations of medicare

National Post

6 days ago

The case of 10-year-old Charleigh Pollock, the only person in British Columbia currently suffering from Batten disease — an incurable illness that attacks the nervous system — offers a very useful window into how Canada's health-care systems really work. Whether we want to look through that window is another matter.
Article content
The treatment Charleigh was receiving costs roughly $850,000 per year. It might extend her life expectancy past 12, which is the normal upper limit for children suffering from the disease. But B.C.'s Expensive Drugs for Rare Diseases Committee, which decides which such drugs should be funded and which should not (every province has an equivalent panel) had determined that the treatment was no longer effective, and cut her off.
Article content
This did not go over well. Opposition politicians, pundits and random social media users alike were practically incandescent. British Columbians 'were horrified by a system that chose cold, heartless logic over showing mercy to a dying girl in the short time she has left,' one provincial columnist, Rob Shaw, fumed at online news site Business Intelligence for B.C.
Article content
Article content
B.C. Conservative Leader John Rustad weighed in: 'What is the point of B.C.'s Canadian healthcare system, if it's not there for families when they need it?'
Article content
Nevertheless, for ages, Premier David Eby and Health Minister Josie Osborne publicly deferred to the committee's expertise. But when the political pressure became too much, they folded, apologizing profusely to the Pollock family. And they didn't just overrule the committee's decision; they basically threw the committee under the bus.
'There's no question in terms of the Charleigh case that the public was not served by the current structure that we have,' Eby said Monday. 'The current structure of a committee that doesn't speak to the media, doesn't speak to the public, makes decisions behind closed doors, only speaks to the treating physician, and even then only through the Ministry of Health, resulted in a scenario where it appeared as though what was happening was the exact opposite of what anybody wants.'
Article content
Article content
At last report, 10 members of the committee had resigned, apparently in protest at having their expertise undermined. Hard to blame them. It's not as though it's a fun job they signed up for, denying treatment to people on grounds of cost.
Article content
Article content
Transparency is always a good thing. If our health-care systems are denying coverage for very expensive drugs for very rare diseases, we deserve to know why. But it's very easy to figure why the members of this committee are typically anonymous, and why they don't talk to the media: As Charleigh's case shows, these decisions make people very angry at the decision-makers, however medically defensible they might be. The committee's job is precisely to make hard-hearted decisions. And in every single case of someone being denied coverage, all the media would want to know is how the committee could possibly be so heartless and cruel, and when will it change its mind?
Article content
The central problem is that no politician will ever dare speak the truth: the 'universal' in universal health care refers to every person, not every single remedy for every single disease that's out there. If we said 'yes' to everything based on emotions, Canadian health care would be even less solvent and sustainable than it is now.
Article content
If that sounds heartless, that's because it is. Public health-care systems around the world rely on this sort of background heartless logic. Private health insurance in the United States doesn't cover every single expensive treatment for every single rare disease; why would public health insurance in Canada?
Article content
To her credit, one ex-member of the committee came out publicly, guns blazing. The government 'systematically undercut the principle of evidence-based medicine,' Dr. Sandra Sirrs told the Victoria Times-Colonist.
She bristled at the notion the committee lacks compassion. 'You have no idea the amount of consideration and thoughtful discussion (that went into the decision),' she said. 'We want Charleigh not to have that disease, and if we couldn't have that, what we want is a drug that reverses the changes she suffered from Batten disease.
Article content
'And if we can't have that, we at least would want a drug that, once started, prevents her from getting worse with Batten disease — and we have none of those.'
Article content
Is some marginal benefit, a few extra months or years of life, worth $850,000 a year to the Canadian taxpayer? It feels horrible even asking the question, which is why no one wants to talk about it. But it's a question that needs to be asked. These newly resigned committee members could do a lot of good by explaining publicly, without spin, why these bodies exist in the first place.
Article content