WATCH ABOVE: An 18-year-old leukemia patient says she’s receiving unnecessary chemotherapy because of a backlog for stem cell transplants in Ontario. Laura Hillier says she’s worried she’ll die before she gets approved for the transplant. Lama Nicolas has the story.
TORONTO — 18-year-old Laura Hillier says she’s receiving unnecessary chemotherapy because of a backlog for stem cell transplants.
“We have the capability to be saving so many lives and are people are on that waiting list dying,” Hillier says.
“Waiting for a bed even though they have a donor, people are dying, when they have so much hope that they’re going to get through this because there are not enough beds and I don’t want to be one of those people and I don’t want anyone else to be one of those people.”
The Burlington teen has Acute Myelogenous Leukemia, an aggressive form for cancer.
She was first diagnosed at 13 years old and was in remission for five years until this past May. That’s when she was told she was a candidate for a stem cell transplant.
Even though there are multiple matches from unrelated donors, she received crushing news and was told she was on a waiting list.
“To hear that, I just started crying right away I couldn’t believe it,” she says.
While Hillier waits, she has to receive rounds of chemotherapy to keep her cancer at bay, but that comes with the risk of relapse, serious illness or even worse.
Hillier says she has been on the same chemotherapy drug before when she was first diagnosed with cancer at 13 years old, which previously led to a brain infection which ultimately damaged her vision.
“You’re telling us there’s a wait time that includes medically unnecessary chemotherapy,” says Frances Hillier, Laura’s mother,
“That was shocking to us. Well I said to the doctor, ‘I’m writing a letter’ and he said it probably won’t help Laura but I said that I’m still writing it because there’s too many people affected if it’s across the province, it’s too many, but if it’s across the country, it’s shocking to me.”
There has been significant advancements in stem cell transplants with higher curability rates, but the demand is growing and there aren’t enough specialized beds.
A spokesperson for Health Minister Dr. Eric Hoskins said in a statement that the provincial government is committed to “enhancing access to stem cell transplants.”
The statement reads:
- “In partnership with Cancer Care Ontario, we have increased funding for stem cell transplants performed at Ontario hospitals by $2.5 million since 2013/14. We are also investing $25 million into stem cell research over five years to support new treatments and therapies for people living with chronic diseases, such as cancer, multiple sclerosis and diabetes. With advances in care, there are growing demands for stem cell transplants. That is why we are continuing to work closely with Cancer Care Ontario to improve access for patients to ensure that patients can get the care they need as quickly as possible. In Ontario, hospitals work in partnership with their local LHINs to ensure that patients have access to the hospital services they need, and to address funding issues related to specific services and/or access to beds. It is our expectation that hospitals will prioritize patients based on medical urgency, however those decisions are made by each individual hospital.”
There are only three hospitals in Ontario that do stem cell transplants involving donors who are not relatives, like in Hillier’s case — The Juravinksi Cancer Centre in Hamilton, Princess Margaret Hospital and The Ottawa Hospital.
In Hamilton for instance, there are 33 people on the wait list but only a handful will be treated each month.
“Patients may become eligible for a transplant and it require three to four months, in uncommon situations more than that, before the transplant will actually be scheduled,” says Dr. Ralph Meyer, Regional VP of Cancer Care Ontario and VP of Oncology and Palliative Care at Hamilton Health Sciences.
Wait times for Stem cell transplants are managed at the hospital level.
Cancer Care Ontario released this statement in response to the issue of waiting lists for transplants:
- “In the past six to 12 months in Ontario, there has been an increase in people who are eligible to receive a stem cell transplant. This has happened because advances in care have made transplants a safe option for more patients than ever before. CCO has been working closely with hospitals and the Ministry of Health and Long-Term Care to plan for high-quality service delivery. We have steadily increased the funding we provide to hospitals from approximately $9.7 million in 2010/11 to $19.1 million in 2014/15 for stem cell transplants alone. This is incremental funding above hospital baseline volumes. • We recognize that this is an issue that requires more work. This type of treatment is complex, resource intensive and requires specialized facilities. It requires a high degree of specialization and is in an evolving area of clinical care. CCO is working with the Ministry of Health and Long-Term Care and hospitals to enhance access to stem cell transplants in Ontario and ensure that patients receive quality care close to home when they need it. • Stem cell transplants are performed in specialized centres because of their complexity. In Ontario, all three types of transplants (autologous, allogeneic related donor and allogeneic unrelated donor) are performed at the University Health Network/Princess Margaret Hospital, Juravinski Hospital and Cancer Centre/Hamilton Health Sciences and The Ottawa Hospital.”
But Hillier and her family worry the longer the wait, the greater the chance of relapse. And if her cancer reappears, she could be removed from the stem cell transplant wait list altogether. They had considered treatment in the United States, but it’s just too costly.
“I just was shocked that in the 2000’s, we would be giving unnecessary toxins while we wait,” says Laura.
“Even though it’s a lot of money, it’s a simple bed and a room, it’s not like we’re waiting for someone to hopefully be a donor.”
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