PROVINCE TO PAY FOR BOY’S TORONTO TREATMENT
Media coverage, advocacy pressure force government to reverse decision
First, the good news.
The Alberta government has reversed its decision and will now help pay for some of the costs associated with a potentially lifesaving clinical trial in Toronto for eight-year-old Ryken Covino. Next comes the bad news.
It took months of relentless pressure from Ryken’s desperate parents, Tammy and Nat, along with tireless advocacy by several pediatric oncologists, kids cancer agencies and, finally, media coverage to get the government to do the right thing.
That is wrong. Most Albertans want our taxes to help save the lives of children, not teo be gobbled up by a grinding bureaucracy denying care to a sick boy.
Alberta Health Minister Sarah Hoffman deserves some praise for eventually doing what should have been done two months ago — when Ryken was healthier — by agreeing to pay for the stay at Toronto’s Hospital for Sick Children for the Edmonton boy who is suffering from a recurrent and now resistant acute lyphoblastic leukemia.
He also has developed NonHodgkin’s lymphoma.
What all of that means, is ever since Ryken’s initially diagnosed cancer from July 1, 2015, returned right near his birthday in December 2017, traditional chemotherapy treatment has not been effective.
A proven treatment — which has already been approved in the United States — called CD -19 CAR T-Cell Therapy is the only thing that can save Ryken’s life, says pediatric oncologist Dr. Paul Grundy of Edmonton’s Stollery Children’s Hospital.
“I’m ecstatic at the news,” said Tammy, who was reached at the hospital Friday.
“I feel an enormous sense of relief,” added Tammy of Hoffman’s late-night decision Thursday, shortly after a Postmedia initial column on this case was published.
“I don’t have to fight with the system anymore for my son’s life. Now Ryken can have a chance at being a healthy little boy — upbeat and energetic like he used to be,” said Tammy, “so this is just the best, happiest news.
“At the same time, I’m still quite angry,” she admitted.
“I got a letter denying Ryken help to take part in a clinical trial in Philadelphia in July. I have a copy of another letter from two weeks ago denying coverage for the clinical trial in Toronto, but now the government is trying to backpedal by saying he was never denied. I have it in black and white on their letterhead that he was denied,” she said of letters she shared with Postmedia that prove her assertion.
CD19 CAR-T Cell Therapy costs about $500,000, but that cost is picked up entirely by the company that developed this cure and is conducting the clinical trial in Canada. The only thing Alberta Health was asked to cover was the associated hospital costs of Ryken’s stay at Sick Kid’s Hospital — estimated at about $100,000 to $300,000 depending on whether there are complications or not.
Tammy says an “army of wonderful people” supported the family’s fight for Ryken, including the advocacy group Ac2orn (Advocacy for Canadian Childhood Oncology Research Network), four pediatric oncologists from three provinces, the Kids Cancer Care Foundation of Alberta, Miracle Marnie Foundation in Ontario, their member of Parliament Michael Cooper and members of the United Conservative Party.
“But it took media coverage for them to change their mind,” said Tammy. “(Postmedia’s phone calls and story) must have made (Hoffman) jump because nothing else made her jump for months.
“It shouldn’t have taken that many people and media coverage to get the right thing to happen,” Tammy argued. “Our government should want to help save the life of an eight-year-old boy.”
Tammy says that other children will be hit with similar delays and denials if the government doesn’t change the legislation that denies funding experimental treatments or clinical trials.
“The legislation needs to be changed,” insists Tammy.
“Not supporting the care surrounding a clinical trial needs to be changed before this nightmare happens to another family,” she said. “It needs to be done on a case-by-case basis, not just a ‘no’. When people need to access a clinical trial, they do so because it’s their last option. It’s not their first.”
On Thursday night, after the Postmedia column appeared, Hoffman released a statement saying, “I will be informing Ryken’s family that, as per existing Alberta Health policy, if he is admitted into the trial, all associated medically necessary costs will be covered through reciprocal billing agreements between Ontario and Alberta.”
Ryken had been accepted in the Toronto trial more than one month ago and had been accepted into a trial in Philadelphia more than two months ago, which is when the family and supporters
started pushing the government to make an exception in Ryken’s case where clinical trials are concerned, considering the proven efficacy of the treatment and the urgency caused by the boy’s deteriorating health.
Grundy, who spent a lot of time writing letters to the province’s Out-of-Country Health Services Committee and the health minister on behalf of Ryken, said the province’s “strict line in the sand that clinical trials will not be paid for by the province, is not the right approach for a whole host of reasons.”
He had applied to the committee,
which declined the request to help pay for the clinical trial hospital costs, saying doing so would violate the rules. The minister’s office declined, saying politicians shouldn’t interfere with the independent committee’s decisions, event though the rules were made by politicians.
“It was a vicious circle argument,” he said. “That definitely has to change because in many of these cases, time is of the essence.”
“It’s not that they should be funding all experimental therapies — not by any means — but particularly with childhood
cancer, where it’s uncommon and we’re only going to have a few kids a year in Alberta for whom we don’t have an effective treatment, but for those kids, we need to be able to participate in clinical trials.”
Tammy says once Ryken is well and life is less hectic and stressful, she hopes she doesn’t have to continue the fight for kids like Ryken who need access to these clinical trials.
Here’s hoping the government is listening. That way going forward, it will always be good news with no caveats.
Ifeelan enormous sense of relief. I don’t have to fight with the system anymore for my son’s life.