When I last visited with Victor Boudreau, it was concerning a little girl (Kamie Babineau) who lives near Moncton that needed a life-saving treatment that is very similar to the treatment that Morgan needs. In fact, the only difference is the enzyme that each of these kids need. It’s simple really – unbelievably simple. Kids suffering from MPS lack an enzyme in their blood that breaks down cellular waste. The cellular waste that doesn’t get broken down needs to find a place to go so it stores itself in the bones, tissues, organs, and muscles of our kids fighting the disease.
The treatment our kids receive to help fight off the ravages of MPS is a synthetic version of the enzyme they are missing in the blood. Basically, our kids are missing this enzyme and we are giving it back to them. The enzyme treatment breaks down all of the cellular waste that is building up in the body and helps patients lead a more normal and healthier life.
It really is that simple, and it’s why Minister Boudreau approved access to the drug Kamie needed within days of receiving her application.
When we met at that time, Mr. Boudreau told me that one of the main reasons that he was so passionate about the work we are doing was because of a quote that tops my website, and a quote I work to live my life by. It’s a quote by Margaret Mead that read “Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.”
Mr. Boudreau told me he saw this on my website and it struck a cord with him. He told me that Premier Gallant often uses this quote during cabinet meetings, telling his team that they have the opportunity to be that small group of committed citizens, and to always work to change the world in everything they do.
When he saw this on my website, Minister Boudreau told us that he went directly to the Premier with Kamie’s application for treatment and told him they needed to do something, and fast.
And it was fast – days. In a matter of days, Kamie’s application for treatment was approved. A short while later, she began her life-saving treatments and is thriving today. Thriving because the treatment works. Her life had been saved.
During that same meeting, I told Mr. Boudreau about Morgan Doucet. I told him there was another boy needing a very similar treatment and that he needed it fast. The treatment had been approved by Health Canada 8 months earlier and the Ministry of Health wouldn’t accept the physician’s application for reimbursement for Morgan. At that time, the Ministry said they “didn’t know what to do with the file.” Mr. Boudreau told me he would take the application and he would get back to me very quickly.
In reality, The Ministry of Health DID know what to do with Morgan’s file because they have been part of a larger collective in the country – a collective of all of the pharmaceutical managers throughout the country who made an agreement that they wouldn’t approve payment for the drug Morgan needed. Why? Cost. It’s an expensive drug and the Provinces wanted to work together to bring the cost of this treatment down. They discussed the drug together, made a commitment that “nobody would be the first to approve” and began work to bring the cost of the drug down.
In theory, brining the cost of pharmaceuticals down in this country is a good thing. I’m all for getting the best price on things, especially expensive things. But not at the expense of the people who have to suffer while the bureaucrats play hardball with the pharmaceutical industry.
I’ve had conversations with different provinces about this issue over the course of the past 2 years. They stand by their approach to this drug, even when told that it’s putting our kids in the middle of a battle that they want no part of, even when told that our kids are dying while they try to get the best deal possible for their respective Provinces.
Unfortunately for Minister Boudreau, he didn’t discover this until he took Morgan’s application and promised to get back to us quickly. Days turned into weeks, which turned into months. A battery of tests were ordered on Morgan and the Province worked to delay a decision on Morgan’s treatment by adding new tests after the original batches were complete.
When a decision on Morgans treatment was deemed “imminent”, the Ministry of Health ordered Morgan to undergo a sleep study, knowing full well that the New Brunswick didn’t have the capabilities to conduct such tests in the Province and that Morgan would have to fly to the Hospital for Sick Children in Toronto to have the tests done.
This is when I started to move from frustrated to upset. Why? Because the Ministry was well aware that the test Morgan required would take months to complete due to a wait list at Sick Kids in Toronto. Add to that the stress and burden placed on Morgan and his family by leaving their home, boarding an airplane, and finding their way around a huge city (something they have never done before).
But it wasn’t the delay which was incredulous to me, it was the test that was ordered with the clear intention of delaying things further for Morgan. They wanted a sleep study, even though Morgan has never had difficulty with his sleeping. Ever.
With some perseverance, we were able to remove the sleep study from the tests the Ministry ordered for Morgan. After that removal, the Province denied Morgan’s application. I immediately asked how we could appeal the ruling. I asked the Ministry, the Minister, and the Premier in multiple emails and phone calls. I was ignored each and every time.
Which brings us to where we are today. I relayed all of this to Minister Boudreau when we met yesterday and he told me he would take another look at Morgan’s file. He told me he would look at things after I told him the pharmaceutical managers have agreed to work together to deny access for our kids as they wage war on Big Pharma. He told me he would look into things after I told him the review process was flawed and set up to fail from the very beginning. He told me this after I told him that Saskatchewan saw through this flawed system and took it upon themselves to initiate their own proper, thorough, and transparent review. A review free of bias from Ministry officials. A review meant to provide REAL feedback.
During that meeting, however, I couldn’t help but wonder where the Minister’s gusto for being part of the small group of citizens working to change the world together went. If this wasn’t the time to step forward and take a stand, make a statement on behalf of a young child, then when? We know this treatment works. We know because we have 33 Canadian children receiving the treatment throughout the country. We know because the International and Canadian experts have all said it should be used in our kids as soon as possible.
And I know because I see it working each and every day, with every patient I visit, with every drop of drug that gets dripped into their body. Their lives are changed – saved – and we can see it in everything they do.
Saskatchewan took the lead and moved away from this review process. They did this because it is the right thing to do by patients.
So I again implore Victor Boudreau and Premier Brian Gallant to be part of that small group of citizens working to change the world. Take it upon yourselves to be the true leaders your Province needs you to be. I’m not asking for immediate access to treatment, just the commitment to a new, thorough, and transparent review of Morgan’s file. A review completed by the real experts out there, free of bias and bureaucratic interference.
Morgan deserves that opportunity, and it’s incumbent on your offices to be sure that he gets that chance. Please be part of the change you purport to stand for and don’t hide behind the excuses being handed to you by the bureaucrats. The government has nothing to lose by ordering a new review, but Morgan has EVERYTHING to lose if they don’t.
This shouldn’t be about cost, about the Provinces of Canada vs. Big Pharma. It should be about Morgan, and I ask you humbly to refocus things on that little boy. In the end, it WILL change his world.
I stand by my offer to bring in Dr. Paul Harmatz to talk with you about this disease, this treatment, and this case. He’s the best in the world when it comes to this disease. If your government is open, transparent, and about the change you want to see in this world, a good first step toward showing this would be to talk with Dr. Harmatz and get the real information you need.
I’ll be in Fredericton this week and hope we can discuss while I’m there.
An Open Letter to Brian Gallant and Victor Boudreau December 13th, 2015mcfadyena
