Stephen Saunders (centre) with his four children (left to right): Calder, Hailey, Payson and Regan. Saunders went to Boston for CAR T-cell therapy, which wasn’t yet available in Nova Scotia. (Photo courtesy of Hailey MacDonald)
Stephen Saunders didn’t have a lot of time left. A couple of months, his doctors said. But Saunders wasn’t going to go gently into that good night.
He was going to Boston for treatment.
“I remember that [dying] wasnʼt in my head,” says Saunders from his home in Nova Scotia.
He was determined to carry on living. So when his doctors told him about a last-ditch treatment option that wasnʼt yet available in the province, he and his family decided to make it happen.
Saunders was diagnosed nearly four years ago with a rare and progressive form of non-Hodgkin’s lymphoma, a type of blood cancer. By the time he was told he had mere months to live, Saunders had gone through four rounds of chemotherapy and a clinical trial exhausting all treatments available at the time in the province. It was then he was told of another treatment that might help: CAR T-cell therapy.
Over the past 20 years, the Leukemia & Lymphoma Society in Canada and the U.S. have collectively invested
C$40-million in CAR T-cell immunotherapy, supporting the development of this therapy by funding more than 15 researchers and companies around the world.
CAR T-cell therapy involves removing some of a patient’s own T-cells, the soldiers of the immune system, and modifying them in a laboratory to find and attack cancer cells throughout the body.
The treatment – officially known as chimeric antigen receptor T-cell therapy – was approved by Health Canada in September, 2018, and was beginning clinical trials across the country, but it was not soon enough for Saunders. The closest hospital with the immunotherapy treatment was the Dana-Farber Cancer Institute in Boston, but it would cost nearly $900,000 and Nova Scotia initially refused to cover it.
The expensive price tag and the province’s refusal didn’t stop Saunders and his family. They launched a social media campaign with the support of the Leukemia & Lymphoma Society of Canada to raise money and put some pressure on Nova Scotia’s health department.
“The Leukemia & Lymphoma Society of Canada was very helpful,” Saunders’s daughter Hailey MacDonald says. “They reached out to the societies in other provinces to find out about patients in their area that were offered CAR T and they helped find out what the procedure for getting CAR T was in those provinces. They also wrote a letter on dad’s behalf to the Minister of Health to ask for approval.”
The feedback was overwhelming, MacDonald says. They received messages and donations from complete strangers across the country who wanted to help.
“I don’t wish the stress of this type of situation on any family and I wish no one would have to fight so hard to get a life-saving medical treatment.” – Hailey MacDonald, Stephen Saunders’s daughter
“We also had people reaching out asking if CAR T would help their family members as they were in a similar situation as dad, where they had come to the end of available treatments for their cancer,” she says. “We are still amazed at the number of people who shared our social media posts and sent a letter.”
They raised the whole $900,000 in about six weeks and changed the health department’s mind, which overturned their initial ruling, calling it a mistake.
“Once it gets rolling, and with my family helping, things started to snowball. We knew who to contact and things came together really quickly. And I was fortunate that way,” Saunders says. “And at the time, the government had surplus money for health – I guess a little bit. We sort of forced their cards to play them, then they had to do it. Well they didn’t have to do it, but they did it.”
His doctors also supported him going to Boston for the treatment. Saunders received the CAR T-cell therapy and considers himself cured. He has no regrets but wishes it hadn’t taken so long to get the therapy.
“I would like to see CAR T brought in faster than it did for me as I went through four of the treatments before this one, right?” Saunders says. “I think CAR T has got to come to Nova Scotia because if they can treat people, diagnose them faster, then they wouldn't have to go through all the steps that I did in order to get it.”
Saundersʼs cancer is in remission but he is still dealing with the side effects of his treatments. “I still have nerve damage and stuff like that from the other treatments,” he says. “My balance is not great, but it’s not bad; getting better.” He says he’s moving around and being active, as it’s not in his nature to just sit around.
While MacDonald is obviously pleased with her father’s remission, she wishes he hadn’t had to have reached out to the public for help.
“I believe patients shouldn’t have to share their private medical history on social media or be in the media in order to get approved for coverage that is available to patients in other provinces,” she says. “I don’t wish the stress of this type of situation on any family and I wish no one would have to fight so hard to get a life-saving medical treatment. Patients and their families already have enough stress trying to fight their sickness without having to worry about trying to pay for a treatment that could save their lives.”
The money Saunders and his family raised covered costs such as lodging, meals, taxi fares and prescriptions – items not covered by the province or beyond what was covered by the out-of-province travel and accommodation assistance program. The money left over after their trip to Boston was donated to other families in need, MacDonald says.
In the end, Saunders is glad he fought to go to Boston. “You’re going to [have to] advocate for yourself, that’s for sure. It’s not the easiest route but you know, you [have] got to be positive and I guess do what the doctors tell you to do,” he says. “They’re smart people.”
To speak with a Leukemia & Lymphoma Society of Canada information specialist who can offer assistance through the cancer process, financial and social challenges and provide treatment and support information, visit llscanada.org/support/information-specialists
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