5 days ago
Self-styled 'progressive B.C. government' picks fight with 10-year-old that it couldn't win
VICTORIA — B.C. Premier David Eby finally found a way this week to restore funding for drug treatment of a 10-year-old girl with a fatal genetic disease, thanks to 'a disagreement among experts.'
New Democrats were deeply embarrassed by their government's mishandling of the case of Charleigh Pollock, the little girl ravaged by Batten disease.
The government stopped funding Brineura, the only available drug for staving off the severe seizures associated with the disease, after a panel of experts said it no longer met the standards of effectiveness.
The decision, reiterated last week, relegated Charleigh's family to fundraising on the internet, a daunting prospect considering that the drug costs $800,000 for a full year of treatment.
Charleigh was the only child in B.C. with the disease and the only one in Canada to be cut off from public funding.
That led Brad West, the Port Coquitlam mayor and longtime NDP supporter, to accuse the Eby government of taking the party from Tommy Douglas health care to GoFundMe health care.
Then in a news conference Thursday — the very day that Charleigh was receiving her first privately funded Brineura infusion — the premier signalled that the New Democrats had been presented with an escape hatch.
I had asked him about the case of a little boy in Alberta, the same age as Charleigh with the same disease, whose treatment was being funded by the Alberta government. Was Eby embarrassed that if Charleigh lived one province to the east, she would be fully funded instead of her family being forced to fundraise on the internet?
Eby sidestepped my question. Then he dropped the news that set the stage for the government to reverse itself on funding the girl's treatment.
'We received a letter this morning from more than a dozen experts on Batten disease from the U.S., expressing their perspective on this medication — that it would continue to provide benefit for patients, including for Charleigh, that are at the stage that she's at,' said Eby.
The outside experts expressed 'very serious concerns' about the outdated criteria that were applied here in Canada in judging the efficacy of the drug. They called for 'a review of the criteria' and 'strongly opposed the decision to withdraw funding for life-sustaining Brineura from Charleigh Pollock.'
The premier described the letter as 'weighty,' adding 'I take it seriously. I know the minister does as well.'
B.C. Health Minister Josie Osborne would be discussing the letter with members of the panel of experts, who had advised her to discontinue funding for the drug.
'We have a very challenging situation here where we have a disagreement among experts,' said the premier, suggesting the government could use the disagreement to err on the side of caution and restore funding.
Sure enough, later that day came a statement from Osborne.
'I spoke to Charleigh's family earlier this evening,' she said. 'I confirmed to them that I have reinstated Charleigh's Brineura coverage and that coverage will be available to them for as long as the treating physician and the family deem it appropriate.'
This time Osborne spoke to Charleigh's family in person. When the minister reaffirmed the decision to discontinue coverage last week, Charleigh's mother was advised by email, mere minutes before the news was announced to the media.
'I continue to strongly believe that decisions about care should be made by health experts to ensure they are based on the best available evidence,' Osborne continued. 'The letter I received today from Batten disease experts confirms there is significant disagreement between health experts on Brineura. It is not acceptable that Charleigh and her family suffer as a result of that disagreement.'
In a followup Friday, Osborne held a virtual news conference, where she confirmed that she had apologized to Charleigh's family for all that they had been put through.
Charleigh's mother, Jori Fales — the hero of this entire affair — told Mike Smyth of CKNW that she had accepted the apology.
The minister confirmed that the decision to restore funding would include reimbursing the cost of this week's treatment, the one that was in line for private money.
I asked the minister about the rumour that some members of her expert panel had threatened to resign if the decision to discontinue funding were overruled. She said she had not received any letters of resignation to that point.
However, an hour later a ministry staffer phoned me to say that three of the 58 panel members had resigned. Later a fourth letter came in. I don't imagine the New Democrats will refuse to accept the resignations.
Osborne has commissioned a review of all the evidence for and against Brineura. She said the province will also approach the Canada Drug Agency about its procedures.
The New Democrats should also be asking how they dug themselves into this hole in political terms.
It's not every day that a self-styled 'progressive government' picks a fight it can't win with an ailing 10-year-old over the one drug that can stave off the worst ravages of her disease in the time that she has left.
vpalmer@
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