Anya Martinez has spent as many days of her young life in hospital as she has at home.
The toughest part of the six-year-old’s battle with leukemia came during Christmas, when she was constantly in pain after receiving a bone marrow transplant.
Even then, she was thinking about the other children in the hospital, hoping Santa would bring them gifts.
“I want to help other kids,” she explained.
Her parents want to help give her the gift of life but are running out of options.
Doctors at Sick Kids Hospital and McMaster Children’s Hospital have tried all of the standard treatments to kill her cancer. But radiation, chemotherapy, and a bone marrow transplant haven’t worked, which is extremely rare.
But there is hope.
A clinical trial underway at The Children’s Hospital of Philadelphia has shown promise in treating acute lymphoblastic leukemia (ALL).
Immune cells known as T cells are taken from the patient and modified before going back into the body.
“What we’re trying to do is make the T cells go after the cancer cells”, explained Dr. Stephan Grapp, an oncologist with The Children’s Hospital of Philadelphia.
According to the hospital, 27 patients (22 children and five adults) have been treated using T cell therapy. Of those patients, 24 went into remission for some length of time while 18 of the 24 remain in remission.
Even though the news may seem encouraging, the hospital cautioned “it is still very early in testing and…not all children who qualify for the trial will have the same result.”
“This is her best option right now,” said Anya’s father Michael Martinez, adding her doctors feel it is the best hope.
There is just one issue: price.
Although the trial itself is free, explained Martinez, the cost of hospital care is estimated at between $500,000 to $800,000 US.
OHIP will not fund it. Ontario’s Ministry of Health and Long-Term Care would not comment specifically on Anya’s case but told Global News it does not cover experimental treatment.
“Everything that we’re using today – chemo, radiation – at one point was a trial,” argued Anya’s mother Dorothy.
“How do you deny a kid a chance to live?”
A patient advocacy group understands the hesitance of Ontario to fund the treatment.
“It’s a very new trial. There have only been a handful of people that they have tried it on. I think that’s the big fear with OHIP,” explained Lorna Warwick, senior national director with The Leukemia & Lymphoma Society of Canada.
However, Warwick is urging the government to reconsider.
“With a case like this where Anya has little hope of anything else working…we would much prefer that the government would look at this honestly and say this is a good chance for this little girl to live.”
The trial might eventually come to Ontario. But even if Anya were treated in the province, it would still be categorized as an experimental procedure and therefore would not be covered by OHIP, explained a health ministry spokesperson.
Anya’s parents have started an online fundraiser and so far have raised over $100,000.
The family has also appealed OHIP’s decision but is prepared for the worst.
“We’re going to sell the house, we’re going to sell the cars, we’re going to drain every penny we have in the bank account,” said Martinez.
The hospital in Philadelphia could be ready to treat Anya in July. The family vows to go no matter what.
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