Just three years ago, Toronto resident Grayson Domingues was well on track to achieve his life’s goals.
“I was 21, I was going to school at Dalhousie in Halifax, I played football and I was studying sports psychology,” he told CityNews.
Today, both his football and college career have been sidelined. In 2023, while attending Dalhousie, he began to experience back pain and frequent hiccups. Doctors first chalked it up to his active lifestyle and diet. But his condition continued to worsen.
“I couldn’t sleep. It was hard for me to do anything. Like I couldn’t study. I couldn’t really sit still because my back hurt so much. I was burping all the time,” he explained.
Further tests were conducted and the results were devastating.
“They had found a tumour in my esophagus and then they did a bunch of other scans and they found them in my liver, all over my back,” he said.
He was diagnosed with stage 4 neuroendocrine carcinoma.
“It’s rare enough in the general population but then for somebody as young as me it’s even more rare,” he said.
Grayson, who returned home to Toronto, began chemotherapy and other treatments. While they were initially effective, they eventually stopped working.
“Then I ran out of options here in Canada. Doctors said there isn’t anything here that can help me further. That’s when we had to look for clinical trials and they’re all in the States,” he said.
With the help of his mother, Mary Kalkanis, they applied for several clinical trials, all in the U.S. The process became a full-time job.
“In Grayson’s case, because he’s been dealing with this for over three years and went through so many chemo treatments, that excluded him from several trials. You just keep searching and applying to find one that fits,” said Kalkanis.
This year, Grayson was accepted into a clinical trial 749 kilometres away in Hackensack, New Jersey.
“We were thrilled,” Kalkanis said.
But the financial and time commitment required to take part in the trial is immense. While the trial covers the medication administered to Grayson, everything else, which Kalkanis says amounts to $400,000, is paid out of pocket.
That’s not including the travel costs needed to make the trip.
“We fly in for the day, stay overnight and then leave. When he does his treatment every three weeks, we’re there for three or four days,” she said.
Kalkanis has already gone through her savings and dipped into her retirement funds.
“The reality is that OHIP doesn’t cover any of this and $400,000 – plus travel, plus accommodations – is more than one person can handle,” she said.
As Speakers Corner has reported in the past, OHIP rarely covers out of country clinical trials.
“It has to be something that isn’t experimental, that is an accepted treatment in Ontario,” Natalie Mehra with the Ontario Health Coalition told us.
Like most clinical trials, there are no guarantees, but Grayson says patients already enrolled in the trial he’s taking part in have seen success.
The question remains how long the family can afford to keep him enrolled. Without coverage and draining funds, Kalkanis was urged by friends to start an online fundraising campaign.
“They said to me a while ago, start a GoFundMe, and I thought, ‘oh, I don’t want to do that’, but now I don’t have a choice,” she said.
So far the family has raised more than $200,000—far short of their goal.
“It’s quite overwhelming the people who’ve given, not just our friends or family but people we don’t even know. We’re so grateful and so appreciative,” she said.
Kalkanis said the reality is that without coverage for these trials, fundraising is often the only option available to people.
“We feel this is our last option. $400,000 is a lot and people shouldn’t have to turn something down that could possibly help them just because of money,” she said.
“The dream would be that they would open up drugs like that to the rest of the population here in Canada, so you don’t have to break the bank trying to get treatment for yourself,” Grayson said. “But the reality is, this is not covered so we’re kind of on our own.”
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