Boy denied cancer treatment because he lives in Alberta
Eight-year-old Ryken Covino is a victim not just of cancer, but of geography and timing.
If the Edmonton boy were from B.C., Saskatchewan, Ontario, Quebec or Nova Scotia, he would be eligible for a clinical trial treatment that is “his only realistic chance” to beat the leukemia that has recurred, and the non-Hodgkin’s lymphoma the boy has been battling since December.
However, as a rule, Alberta does not fund the medical costs associated with clinical trials and that means the boy who says he just wants to be able to swim and jump on a trampoline again has unequal access to life-saving care simply because he lives in the wrong part of the country.
It’s a rule that needs bending — and fast — by Alberta Health Minister Sarah Hoffman.
“This process has been like torture for us,” said the boy’s mother, Tammy Covino, from the family home in Edmonton.
“I watch Ryken get weaker by the day and we’re caught by a rule that other Canadians in other provinces don’t have to deal with,” said Covino.
“He needed this treatment yesterday.”
Ryken was first diagnosed with acute lymphoblastic leukemia on July 1, 2014. Thanks to a bonemarrow donation made by his now 11-year-old sister, Sasha, Ryken was declared clear of cancer in February 2017.
His cancer returned with a vengeance, however, in December 2017 and is not responding to traditional chemotherapy, said the boy’s pediatric oncologist, Dr. Paul Grundy at Stollery Children’s Hospital in Edmonton.
The only thing that can save Ryken now is either a miracle or CD -19 CAR T-cell therapy
— a treatment that is still under clinical trial at Toronto’s Hospital for Sick Children, but has been approved for use in the United States and is slated to be approved by Health Canada in the fall. If the boy is forced to wait until then, it will be too late, said Grundy.
“He definitely doesn’t have time to wait for that,” Grundy said Thursday. “The CAR T-cell therapy is his only realistic chance. We are trying but his leukemia just won’t go back into remission.”
The company that has developed the CAR T-cell therapy provides the T-cells for free, which is a benefit of about $500,000. But the hospital care that will accompany Ryken’s treatment, which is expected to cost around $200,000 to $300,000, is not covered by Alberta Health.
United Conservative Party health critic Tany Yao is baffled why the Alberta government refuses to help this family caught in such a difficult situation
“Given the exceptional circumstances of this case, we strongly urge the Health Minister to urgently reconsider the government’s decision to refuse lifesaving treatment for this child,” Yao said in an email Thursday.
“Albertans pay for a costly health-care system with the expectation that they and their families have access to health care when they need it,” he said, particularly “given the countless spending decisions they are readily willing to green-light.”
Michael Cooper, the Conservative MP for St. Albert-Edmonton, said: “It is completely unacceptable that Ryken is being denied this life-saving treatment simply because he lives in Alberta.”
Can any Albertan think of a better use of taxpayer dollars than giving a child a chance at life?
Ironically, and potentially tragically, the family moved from British Columbia to Alberta after Ryken was declared better, so his father Nat, 33, a heavy duty mechanic, could practise his trade.
“We talk about health care being one of our core Canadian values but then we don’t all have access to the same health care simply because of which province you live in,” added Grundy.
Obviously, it makes much more sense to have clinical trials conducted at just a few health centres, or even just one, but then those trials should be made available equally to all Canadians.
That is the broader issue behind Ryken’s story that his mom is trying to have addressed by a petition she started, that had more than 18,000 signatures by late Thursday afternoon.
“My son has . . . been accepted to get treated in Toronto, but we were denied financial support to get treated there as well, in our own country,” she states in the petition. “Our health-care system is failing my son. We are out of options: his life depends on this treatment.”
Hoffman’s office said they are working on Ryken’s case and that a statement will be issued likely in the next day or so.
Patrick Sullivan, a Vancouver lawyer who co-founded the group Ac2orn (Advocacy for Canadian Childhood Oncology Research Network), has been pushing behind the scenes with the Office of Out of Country Health Services Committee in Edmonton to recognize that this treatment will soon be approved in Canada anyway.
“Ryken’s case is completely an accident of timing and geography,” said Sullivan, whose own son, Finn, died of cancer.
“This is no longer considered experimental treatment. It’s proven and should be approved for Ryken,” he added.
Christine McIver, the founder and CEO of Kids Cancer Care Foundation of Alberta, and an Ac2orn board member, is frustrated by the delay the red tape is causing for Ryken.
“It is urgent beyond words for the health minister to be persuaded to fund Ryken’s treatment for CAR T-cell therapy at Sick Kids — without delay. Every moment counts,” said McIver, whose son, Derek, died of cancer when he was nine.
As for Ryken — who has not been able to attend school since December and must stay away from public spaces because treatments have knocked out his immune system — he just wants to be able to play like other kids and even go to school.
“I really need this treatment to get better,” said the articulate lad. “Then I could get my port out and swim again,” he said of the medical device in his chest where he receives his chemotherapy.
“If I get the treatment, my mom and dad will be really happy.”
Here’s hoping they are ecstatic soon.
We talk about health care being one of our core Canadian values but then we don’t all have access to the same health care simply because of which province you live in.