When I started to write it Thursday, I was steamed about the cold-hearted treatment little Jasper More was getting from Ontario’s health ministry.
Just two-and-a-half years old, Jasper has mucopolysaccharidosis VI (MPS VI), an inherited, life-threatening disease, (commonly known as Maroteaux-Lamy Syndrome).
It’s a rare but deadly condition that, untreated, will cause him a short life full of pain.
Most children who suffer from it grow no taller than three feet.
Without treatment, he’d also suffer from clouded corneas and likely have bone and heart-related issues. Few children, without treatment, survive their teen years.
With treatment, Jasper can live a fairly normal life.
But it’s costly and this week, Jasper’s parents, Darren and Pam, who live in Palmerston, were — initially — turned down for funding for the drug.
I was set to froth and fulminate about how the government that blew a billion dollars on an eHealth boondoggle, wouldn’t pay to save a baby’s life.
I was set to snap the government that gave the former eHealth CEO more than $300,000 in severance pay, can’t now find the cash to help little Jasper.
I was going to comment that if you’re a fatcat bureaucrat at the health ministry, you can open the public treasury and help yourself.
But for the average family with a kid with a rare disease? Too bad. So sad. Those taxes you pay are for gluttonous government officials only. Don’t even bother applying.
Then a miracle happened.
Between 9 a.m. when I called Health Minister Deb Matthews’ office for comment, and 4:45 p.m. when she called me back, a light went on deep in the bowels of the ministry.
The government changed its mind. The ministry changed its mind.
Little Jasper will get his treatment paid for, Matthews told me.
“The executive officer just today made the decision that he (Jasper) would receive the drug,” Matthews said.
“I think it’s important to underline that we are absolutely committed to making evidence-based decisions and we will continue to do that, but in these ultra-rare diseases it is very difficult to get the evidence that a drug will be effective,” she said.
Since it’s a disease that only afflicts one in six million people, it’s tough to get the kind of evidence they need to evaluate the drug, Matthews added.
The medication Jasper needs, Naglazyme, is manufactured by the pharmaceutical giant, BioMarin.
His dad, Darren, doesn’t know exactly how much the treatment will cost. He’s been given estimates between $300,000 and $1 million.
“It is very patient-specific. They can’t make it in large doses, they have to make it specific to the patient,” he explained.
The family applied for the funding under the province’s Exceptional Access program.
Last week, Environment Minister John Wilkinson came to their home to talk to them about funding.
“He explained the different processes for applying for rare funding, but we got the feeling he was only there to smooth things over before we got the actual denial,” said Darren.
The bombshell dropped Monday, when the ministry told them they’d been refused funding. Now, that death sentence has been lifted.
Hallelujah! Someone has a heart.
I think it’s Matthews. Good for her for doing the right thing.
Reached Thursday night, Darren said he was, “ecstatic.” His doctor phoned him with the good news.
“I could barely breathe,” he said. “It is such a weight off our shoulders.”
Thursday was a bad day for cold-hearted bureaucrats.
And a great one for little Jasper.