Premier David Eby is pledging to reform the rare drug approval system his government spent months defending as it denied life-extending medication to a dying 10-year-old girl.
The premier made the comments Monday, less than two weeks after restoring drug coverage to Charleigh Pollock, the Langford girl who has a terminal brain disorder called Batten disease.
At least 10 physicians have since resigned from the province’s Expensive Drugs for Rare Diseases committee, accusing the government of political interference in overriding their recommendation to cancel Charleigh’s coverage.
“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, [which] resulted in a scenario where it appeared as though what was happening was the exact opposite of what anybody wants—which is … politicians making decisions about access to medicines.”
The BC NDP government has been rocked by Charleigh’s case for the past five months, ever since the government’s Expensive Drugs for Rare Disease committee—whose members are not publicly disclosed and who do not issue any public reports—said Charleigh’s disease had progressed to the point that the drug in question, Brineura, no longer provided a clinical benefit.
The recommendation went against the appeals of Charleigh’s physician, care team, family and global experts in the ultra-rare disease who argued the drug was reducing her seizures and improving her quality of life.
Charleigh is the only person in B.C. with Batten disease, and would have been the first person in Canada to have Brineura discontinued. The drug costs $800,000 annually.
Eby and Health Minister Josie Osborne had pledged not to overturn the committee recommendation. But they did so July 17, after receiving an open letter from 13 international experts in Batten disease who said the B.C. committee failed to consult them, and relied upon outdated research, clinical guidelines and evidence.
“In the Charleigh case, we had two groups of experts fighting it out, one very publicly, one secret committee within the Ministry of Health speaking only through politicians,” said Eby.
“That doesn't work. It didn't work for the public. It didn’t work for Charleigh’s family. It didn't work to resolve the differences between the experts. So we'll have to find a path forward.”
The BC NDP was stung by the case, which prompted widespread public outrage at the prospect of a terminally ill girl being left to a painful death without the medication her family doctor said was easing her suffering. Children with Batten disease typically only live until their early teens.
Greater Victoria residents began fundraising privately, shaming the government and leading to criticism the NDP had reduced a family to “GoFundMe health care.”
The government does not intend to blow up its provincial drug review process with the review. The structure is unique amongst other Canadian provinces, many of whom simply rely on Canada Drug Agency recommendations.
Instead, Osborne has asked staff to find a way to improve public confidence. Maybe that starts with requiring drug panel members to actually speak in public about the decisions they make. That did not happen in Charleigh’s case. Instead, panel members explicitly refused to explain or defend their conclusions.
As a result, it fell to Osborne to explain the committee’s recommendation. She was pummeled for a decision she didn’t make, was trying to respect, and ultimately had to override.
“We have to figure out a way that works for the doctors, the experts who are advising on whether or not a particular patient should receive a particular treatment, and we need to make sure that it works in a way that it's the experts that are making those decisions, and that is taking place in a way that's transparent and understandable to the public,” said Eby.
The 10 resignations so far are out of around 50 people on the Expensive Drugs for Rare Diseases committee and its various sub-committees. The ministry does not currently believe the resignations will have any impact on drug recommendations. The positions are volunteer and unpaid.
“I hope that the experts who are on the committee and who have left the committee are willing to work with us to identify a structure that's going to work for them, but also work for British Columbians in these incredibly difficult cases that will continue to come forward as science develops more and more [for] boutique treatments for rare illnesses,” said Eby.
One member of the committee, who went public with her resignation, said public confidence in the system was damaged after Osborne overrode her recommendation and restored Charleigh’s medication.
With respect, it’s a spectacularly delusional reading of the public mood.
People weren’t alarmed by politicians intervening to show compassion. They were horrified by a system that chose cold, heartless logic over showing mercy to a dying girl in the short time she has left.
In the absence of anyone being able to explain otherwise, the public sided with the girl, her family, her doctor and international experts—rather than the anonymous, secretive, silent, unaccountable drug review committee.
If members of the committee can’t see how or why that happened, let them stay resigned. No matter what fixes the government comes up with, British Columbians deserve drug experts with humanity, not just credentials.
Rob Shaw has spent more than 17 years covering B.C. politics, now reporting for CHEK News and writing for The Orca/BIV. He is the co-author of the national bestselling book A Matter of Confidence, host of the weekly podcast Political Capital, and a regular guest on CBC Radio.
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