After three lines of chemotherapy and a clinical trial failed to cure Stephen Saunders, his doctors offered him hope: to send the Nova Scotia man to Boston and modify his T-cells to attack the cancer that’s otherwise left him with just months to live.
But at roughly $900,000 for treatment and the associated hospital stay, hope doesn’t come cheap.
Last week, Nova Scotia’s Health Department denied a funding request for Saunders, whose case highlights the ethical and economic dilemma that all provinces could soon be facing — whether to pay for a treatment that costs about five times more than other life-saving procedures like heart, lung and liver transplants.
Neither the health minister nor the medical director of the Nova Scotia Cancer Care Program would talk about the specifics of Saunders’s case.
But the Onslow Mountain man spoke openly to CBC about a life interrupted at 55 by a pain in his knee that turned out to be Stage 4 non-Hodgkins lymphoma. About how he tries to get in his 10,000 steps on the good days. And about how much he wants to live.
“There’s all kinds of reasons why I want to stay living, things I want to do,” he said. “Watching my kids grow up and being with my partner… bigger projects, travel maybe if I could.”
The cost of a life
Work is underway to potentially offer CAR-T therapy closer to home, but that doesn’t change the question of funding.
Health Canada approved the treatment in September and clinical trials have begun. And in about 18 months, the pan-Canadian Oncology Drug Review is expected to make a recommendation about the treatment’s value, which the provinces use when deciding whether it should be publicly covered.
In the case of this treatment, it could be a life-and-death decision: in adults, CAR-T therapy is meant for patients whose blood cancer hasn’t responded to two or more lines of chemotherapy.
Dr. Drew Bethune says that new treatments offer great promise but their cost can be challenging, especially when there’s limited data about their long-term success. (Steve Lawrence/CBC)
”It’s a very difficult world we live in, with very difficult heart-wrenching decisions,” said Dr. Drew Bethune, medical director of the cancer care program. Bethune is among those who advise the Health Department on whether to fund an out-of-province cancer care request, but he wouldn’t speak directly to Saunders’s case.
But he said that if looking at a request for CAR-T therapy, Nova Scotia would need to weigh the extreme cost, with the evidence of its success and how other Canadian patients who have received it have responded.
“As much as we just like to say, ‘Yes, let’s do it,’ it’s our responsibility to see what impacts it has on the whole [cancer] program, the expense of it.”
Exactly how many Canadians have gotten public coverage for the cancer therapy in the U.S. is unclear, but Ontario alone has sent 26 adult patients in the last two years, according to figures from that province’s Ministry of Health.
Children might be more likely to qualify for out-of-province funding for this therapy, Bethune suggested. A 2018 clinical trial showed the children and young adults treated with CAR-T therapy had an 80 per cent chance of complete remission, while a trial involving adults with the same type of cancer as Saunders showed a 40 per cent complete remission rate.
“I think the evidence is fairly clear that the pediatric age group has a greater success rate with the treatment than the adult age group — but even in the adult age group some of the results are really excellent,” Bethune said.
And he said Nova Scotia would be watching how patients elsewhere in Canada have responded to CAR-T therapy.
Hailey MacDonald says it’s unfair that Ontario is paying for CAR-T therapy for some of its residents, while Nova Scotia has not offered to pay for her father. (Save Stephen Saunders/Facebook)
Saunders’s daughter, Hailey MacDonald, said the decision not to fund her father’s treatment is proof of the inequity in Canada’s health-care system.
The family can’t afford the cost on its own, but she’s holding out hope Nova Scotia may change its mind; she said she got a call from the Health Department on Friday saying it “hadn’t yet made a decision.”
Her father is flying to the Dana-Farber Cancer Institute in Boston this week for a consultation, regardless of the response.
“We understand as a family that this may not happen in time for my dad,” MacDonald said.
“We hope that that’s not the case, but there will be somebody else’s family member that will need this in the very near future. And Dad’s kind of paving the way for other patients.”