Ontarians with aggressive cancers and blood disorders have been dying on waiting lists because hospitals here haven’t had the space, staff or funds to meet the rising demand for life-saving stem cell transplants.

And now, the health ministry has approved a plan that front-line doctors fear will create an even deeper health care crisis: outsourcing hundreds of allogeneic transplants to three American centres at a cost of more than $100 million (U.S.), a Star investigation reveals.

So far, the program has proved a hard sell. Only 19 of 202 patients approved for transplants to date in Cleveland, Buffalo and Detroit have agreed to go.

“This is a disaster,” says Dr. Ahmed Galal, former director of Canada’s leading stem cell transplant program at Princess Margaret Cancer Centre, which formally shut its doors to new patients last month. Just two other centres in the province — Juravinski Hospital in Hamilton and The Ottawa Hospital — provide the complex treatment, which involves using stem cells from a donor.

Why the money that is now funding American transplants, and the months-long hospital stay required, wasn’t used years ago to build Ontario’s capacity is a question on the minds of patients and doctors alike.

“If there is that money, why can’t we spend it to fix our system?” asks Dr. Richard Wells, a clinician-scientist at Sunnybrook’s Odette Cancer Centre. “Is that not the obvious thing?”

The ministry began funding U.S. treatments last fall to cope with massive waiting lists while Cancer Care Ontario works with hospital officials in the province to rebuild the system — a process many agree will take at least two to three years.

Princess Margaret, one of the world’s leading cancer centres, which has offered stem cell transplants since the 1970s — began turning away new patients at the end of March.

Related: Ontario cancer patient ‘can’t say enough’ about Buffalo stem cell transplant

Chantel Sousa, 30, is one of them.

The Toronto real estate agent was 34 weeks pregnant in December when routine blood work showed her platelet count, the cells that help the blood clot when it needs to, was alarmingly low.

A bone marrow test, a tool of last resort, was ordered on a Thursday.

“On Friday morning, they said you’ve got acute lymphoblastic leukemia and we need to get the baby out on Tuesday.”

Without immediate treatment, the prognosis was grim. She could die within months.

Sousa had a week to recover from the C-section and bond with the five-pound, 14-ounce boy she named Lincoln, who was admitted to Sunnybrook’s neonatal intensive care unit and put on a respirator. In that time, she pumped out as much breast milk as she could, knowing it would become “pretty much poison” once her chemotherapy started.

The chemo was just step one in saving Chantel’s life — putting her in remission.

How long anyone stays in remission — that golden state that is supposed to earn patients a spot on a hospital waiting list once a stem cell donor is found — can vary from weeks to months.

“It’s like a ticking time bomb and you don’t know when it’s going to go off,” her doctor Richard Wells said. “If you wait too long, you miss your chance.”

With husband Euan Crisp, 28, at her side every night in hospital, Sousa began imagining her road to recovery at Princess Margaret.

When Sousa got word in late March that an unrelated donor had been found in the Canadian Blood Services OneMatch registry, Wells called Princess Margaret to schedule the transplant. He had no clue they had already closed to new business.

“What we’ve been told is not only is Princess Margaret not accepting patients for transplants but they’ve also declared they won’t provide followup care,” Wells said.

“It’s horrifying,” Wells said. “It’s horrifying and absurd. Here we are in the biggest city in Canada, the best city in the world. We’ve got a medical system that’s high-tech and we’re proud of it. But if you have a disease for which you need a stem cell transplant, we can’t help you.”

Within two weeks of the Star making inquiries about Sousa’s place on the transplant list, a doctor at Juravinski Hospital agreed to see her. The family said the hospital will open a rare bed to offer her treatment next month.

Princess Margaret is seeing 25 per cent more allogeneic stem cell transplant patients this year than last, without adding staff.

“It’s irresponsible for us to take any more patients on our waiting list,” said the centre’s medical director, Dr. Mary Gospodarowicz. “We would be misleading patients who think they’re coming to a reputable, good cancer centre and we’d be putting them at the end of the seven-month waiting list and offering them substandard care.”

Some of those patients are being redirected to Juravinski and Ottawa for tissue typing, consultations and treatments. The majority — 147 patients from September to early April — have been referred to out-of-country care.

The cost per patient is roughly $400,000 to $600,000 (U.S.) per patient, roughly two to three times the cost in Ontario, said Robin McLeod, Cancer Care Ontario’s vice-president, clinical programs and quality initiatives.

"We have over the last few years increased the funding for stem cell transplants from about $9 million to $19 million in the province,” McLeod said. “We have had our capacity planners looking at the cost required for new capital. We’ve also been working on funding models. She added: "This hopefully, will be a remedy in the short term. We’ve got a lot of work to improve things in the long term."

Princess Margaret has hired new social workers to speak with every patient who is asked to go out of country to ensure each understands just how critical timely treatment is.

“We need to stress that as much as we feel sorry that it’s inconvenient, the price for waiting is huge,” Gospodarowicz said.

Once a leukemia patient is in remission, a transplant should happen “no longer than two to three months later,” Gospodarowicz said.

The wait at Princess Margaret is six to eight months.

“All the transplant services have had people dying on the waiting list,” said Dr. Irwin Walker, Juravinski’s hematology chief and bone marrow transplant program director. Just how many is a question Cancer Care Ontario said it can’t answer because it doesn’t track such data.

Why patients aren’t going to the U.S. for care is complicated.

“Patients don’t want to believe they can’t get the treatment they need here,” Walker said. “They trust the health care people who are looking after them, who have treated them with good care up to date.”

Another obstacle is the U.S. hospitals’ requirement that patients be accompanied by a caregiver for the three to six months that they are receiving treatment.

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The procedure involves one month of in-patient treatment followed by roughly three months of intense outpatient treatments. By this point patients are medically fragile as their immune system is rebuilt using donor cells. Risk of infection and other complications is high. Caregivers are relied upon to help track medications, flush intravenous tubing and change dressings.

The Health Ministry is expected to announce $30 million in infrastructure funding to be divided equally between Princess Margaret, Juravinski and Ottawa. Hospital executives and senior transplant physicians are meeting regularly with Cancer Care Ontario and ministry officials to discuss when that money will become available.

“Going forward, I don’t think anybody believes that that’s enough,” said Gospodarowicz.

The ministry money is supposed to be used to create more beds, but that only addresses one layer of the problem.

More patients than ever with cancer and blood disorders can be helped, even cured, with a stem cell transplant. To meet demand in the province, the system needs more highly trained doctors, nurses, pharmacists and lab technicians to start — resources that the stem cell transplant programs have been pleading for officially since 2007.

Juravinski has doubled the number of patients it sees for allogeneic stem cell transplants to eight a month from four, but hospital President Dr. Ralph Meyer admits that kind of volume is not sustainable.

“The physicians felt it was too dangerous and we were too vulnerable,” Walker, Juravinski’s stem cell transplant director, told the Star. They’ve reluctantly agreed to reduce capacity to six transplants a month until the hospital can adequately address staffing problems.

Walker told the Star he has been walking around “with chronic rage” for years as hospital administrators and government officials failed to meaningfully address the emerging problem, instead handing out Band-Aid money here and there.

He believes the only reason Ontarians today are being offered an opportunity to seek faster treatment out of country is because one of his own patients, Laura Hillier, spoke publicly last summer when she discovered she was one of more than 30 people at the Hamilton hospital ready and waiting for a transplant that could have cured her acute myeloid leukemia.

Hillier, 18, died on Jan. 20, 2016, at Juravinski Hospital, in the arms of her family.

“The problem is that it’s only patients who can stir things up,” Walker said. “When people complain that they’re not getting the right treatment, that triggers things.

“Without Laura, none of this would have happened.”

By the numbers

202: Ontario patients who were candidates for a stem cell transplant and whose cases were reviewed by a new provincial committee of doctors and ministry officials for out-of-country care since the fall of 2015

19: Ontario patients who have received or are going to receive a stem cell transplant in the U.S. through this new program

66: Ontario patients who are clinically ready and waiting for a transplant, whose cases have not yet been reviewed by the provincial committee that approves out-of-country care as of mid March 2016

40: Upper age limit at which patients could be treated with a stem cell transplant when the treatment was introduced in the early 1970s.

55: Average age of patients today who receive stem cell transplants.

35-40: Age range of most stem cell transplanters by the time they have finished their specialized education and residencies.

255: Number of allogeneic stem cell transplants (using related or unrelated donors rather than the patient’s own stem cells) provided in Ontario for the year ended March 31, 2016 at Princess Margaret Cancer Centre, The Ottawa Hospital and Juravinski Hospital.

160: Number of allogeneic stem cell transplants performed across the three hospitals in 2010.