Big push for a little boy
Family petitioning province for funding to cover drug treatment for 10 year old with cystic fibrosis
Ben Buzzell was born in Sarnia in February 2008.
In terms of timing, it was terrible luck. Two months later, Ontario mandated newborn screening for cystic fibrosis, a genetic disease Ben inherited and suffered through until it was eventually diagnosed two years later. By then, Ben was malnourished and always hungry, had trouble breathing, and was not growing at a healthy rate.
Now 10, Buzzell lives on Manitoulin Island with his family. They moved there in 2014 after concerns that Sarnia’s Chemical Valley was exacerbating the young boy’s symptoms.
Now they’re looking for treatment for the disorder, which largely affects breathing and digestion.
“His symptoms have alleviated since we went up (to Manitoulin),” said Zak Nicholls, Ben’s father. “After four years, that appears to be the case. (His symptoms) are quite better up there.”
Ben still requires treatment, based mainly on a respiratory aid he takes before and after school each day. He also requires an enzyme replacement before he eats most food. Even then, the 10-year-old suffers from asthma and a host of other respiratory problems, and is shorter and skinnier than most of his peers.
He will likely remain that way. Nicholls and other members of Ben’s family are petitioning the Ontario government to publicly fund the gene therapy drug Orkambi, an approved treatment for cystic fibrosis. It’s not a small ask. The drug costs roughly $250,000 per year, and the Canadian Agency for Drugs and Technologies in Health turned down two requests by the drug producer — most recently this fall — to have costs for the drug reimbursed.
With federal reimbursement off the table, possibly for good, people like Ben are looking to their home provinces to make the drug publicly available.
“It’s available if you have private coverage and it’s available if you’re rich,” Nicholls said.
The gene therapy drug could potentially help Ben’s lungs and prompt more regular development, but it remains a tough sell.
“If it was a one-time cost we would probably find a way,” Gary Nicholls, Ben’s grandfather, said.
Ben said requests to Ontario’s minister of health, Christine Elliott, have gone unanswered, so now the family is trying to get more people on board.
That’s one reason Nicholls travelled to his hometown this month – to promote the public funding of Orkambi.
“(The response) has been really positive,” Nicholls said.
Screening newborns for cystic fibrosis is important to fostering early treatment of the disease. That does not mean cystic fibrosis is cured — it’s not — but an early diagnosis can prevent early problems in development. Ontario residents born with cystic fibrosis before April 2008 are therefore more likely to have debilitating, long-term conditions.
Those conditions already cost public health thousands of dollars every year. They do not cost $250,000 per year. The Nicholls family will not be deterred.
“He’s going to have limited growth with the current treatment,” Nicholls said. “We’re not asking for money; we’re asking for public access to medicine.” firstname.lastname@example.org
Zak Nicholls holds a photo of his son Ben Buzzell, 10, who was born two months before mandatory screening for cystic fibrosis was implemented in Ontario. Now his family is lobbying Ontario to publicly cover gene therapy treatment for people with the disease, treatment that could significantly improve Buzzell's quality of life.