When Stephen Saunders cracks a smile and holds out his hand, there’s now a pink to his cheeks and his grip is one to remember.
He shakes his head, still smiling.
“I won the lottery,” he said. “It’s not money, but it’s a lot better.”
The Onslow Mountain, N.S., man has won a second chance at life — although his grit and his family’s advocacy played as much a role as did luck.
His non-Hodgkin lymphoma is now in complete remission.
Fighting for funding
When Saunders first spoke with CBC Nova Scotia in December, he’d just learned from his doctors that the province had rejected their request to send him to Boston for CAR-T therapy.
Without the immunotherapy, his doctor told Saunders he had just months left to live after 3½ years of fighting a disease that three lines of chemotherapy and a clinical trial were unable to cure.
“It felt like an impossible task when we were told that we had to get funding,” said Hailey MacDonald, Saunders’s daughter.
“We kind of felt like we had his life in our hands — we felt like we were so close to losing him that we now really appreciate every single day that we got with him and are going to get with him.”
Saunders became the first man in Nova Scotia to get public coverage for the $900,000 immunotherapy and its associated hospital stay in Boston at the Dana-Farber Cancer Institute. His initial request for funding was denied, but the Health Department later said that was a mistake and a decision hadn’t been made about his file.
Coverage in other provinces
The Boston hospital has treated others from across Canada whose non-Hodgkin lymphoma would not respond to chemotherapy, including at least 26 patients from Ontario, said a spokesperson for that province’s Ministry of Health.
And while MacDonald said she’s grateful the life-saving treatment was covered, she said no family should have to fight for care that is offered by a province such as Ontario.
Securing funding led to a delay in treatment, which meant Saunders had to undergo chemotherapy in Nova Scotia so that he was strong enough to travel to Boston for the extraction of his T-cells in January.
It takes roughly three weeks for clinicians to genetically modify those cells so that they target and kill the cancerous ones — and to give them time to multiply into the millions.
Almost too late
By then, Saunders was almost too ill to have the cells reintroduced into his body, his daughter said. He required emergency chemotherapy to beat back the invasion.
“There is not a doubt in my mind that that very first week we were there that dad was dying,” MacDonald said. “He was on his way out, he was extremely sick and it was a struggle to get him to the hospital.”
Both she and her father acknowledge that he was lucky to be the first to get coverage in Nova Scotia. Luckier still that he’s among the 40 per cent of people treated with CAR-T therapy who go into complete remission — a figure that researchers say may climb if immunotherapy becomes used more widely.
Whether the provinces will publicly cover it in Canada won’t be decided for at least another year. The clinical trials need to be completed before the pan-Canadian Oncology Drug Review will make a recommendation about the treatment’s value.
For Saunders, the value is obvious: he is alive, 15 years after his brother died from the same disease after it failed to respond to the same chemotherapy that could not cure him.
An added weight
His daughter hopes that his success will convince the province to fund it for others.
“Because he was the first person from the Maritimes to go, we felt that if he didn’t do well that it might hinder other people’s ability to get the chance to go and get this therapy,” she said. “So there was kind of a double relief when we got this good news.”
MacDonald said she believes there are ways to reduce the cost of delivering CAR-T, which is now roughly five times the price of life-saving procedures such as heart and lung transplants.
The other patients Saunders met in Boston were getting the treatment after only one or two failed rounds of chemotherapy. He underwent three, the latter of which involved a four-month hospital stay, and then moved on to a clinical trial.
“If we can get it earlier in someone’s cancer journey, then that would be something that would be a huge help cost-wise,” MacDonald said.
“And the other thing would be that because these patients are starting off at a healthier point, there would be fewer scans and shorter hospital stays associated… those are costs that we have to look at as a province.”
‘I say I’m cured’
Saunders won’t know if he’s been cured for at least five months. But his doctors are encouraged at how quickly he went into remission — at 38 days, according to a PET scan — which they consider a good omen of the treatment’s long-term success.
But after four years of battling this illness, Saunders said he feels healthy.
“I say I’m cured,” he said, smiling again. “I’m getting stronger all the time so knock on wood, it worked.”