The voice of the 18-year-old girl cracks in distress. She’s propped up on a hospital bed, eyes swollen from crying, lips stained red from bleeding lungs.
“. . . I’m in the ICU . . . I can’t breathe. Soon, a tube will be stuck down my throat again. And for feeding as well. And I won’t be able to talk. They said I may not wake up but I really hope I do. But if I don’t, I hope this never happens to anyone ever again. And that the government sees that there needs to be funding. Because people are dying when we can save them. We can save these people. Please help. Thank you.”
Laura recorded these words, shared for the first time, because she thought they would be her last.
While her friends were graduating high school and settling in as freshmen at university, the Burlington teenager was getting a cruel lesson in the fatal shortcomings of Ontario’s health-care system.
Laura went to Juravinski Hospital in Hamilton expecting to get better, cured even. Yes, the acute myeloid leukemia that nearly killed her five years ago was back but it was beatable.
And she couldn’t have been in better hands. Her own physician, Dr. Irwin Walker, is a Canadian pioneer of the stem cell transplant procedure Laura thought she would receive but never did.
Instead, for seven excruciating months until her death on Jan. 20, the teenager bore witness to one of the province’s most devastating health-care secrets, and died trying to do something about it.
Laura was one of hundreds of Ontarians tacked to the bottom of a too-long wait-list for the transplant procedure — a wait-list most patients didn’t know existed.
What follows is a raw account of how a public health-care system we consider among the world’s best failed Laura and many other patients like her.
You will hear from her parents for the first time since their first-born daughter’s death about the extraordinary work they are doing to keep their promise to Laura that her death would not be in vain.
You will hear from doctors across Ontario who are finally speaking out publicly on how an essential cancer program — allogeneic stem cell transplantation, which rebuilds a patient’s immune system using donor cells — is on the brink of collapse.
In a letter obtained by the Toronto Star, transplant program chiefs warn Cancer Care Ontario about:
the “ethically not right” rationing of treatments that leaves patients dying on absurdly long waiting lists;
about the program’s reliance on “medically unnecessary chemotherapy” to “buy time” until transplant beds became available; and
about the “unseen victims” who could benefit from treatment but aren’t told of the option because referring physicians “tire of being turned down” for transplants.
For years, doctors tried to follow the chain of command, they told the Star — expressing their concerns to government agencies politely in letters and reports about the inevitable collision between “unprecedented demand” for the transplant procedure and inadequate resources.
They say they kept their patients in the dark about how bad things had gotten “because they already have enough misery and stress in their lives,” said Chris Bredeson, head of the blood and marrow transplant program at The Ottawa Hospital. “You try to protect them. Maybe that’s been a mistake.”
The health ministry approved more than $100 million in spending recently to redirect hundreds of patients who will probably die waiting for transplants in Ontario to hospitals in Cleveland, Buffalo and Detroit. More than 200 cases have been outsourced since September, yet only 19 patients have made it there so far.
One month after her 18th birthday in April 2015 — celebrated at an East Side Mario’s in Burlington with a few close high school drama-club friends and a movie-night sleepover — a flare shot up in Laura Hillier’s body, warning her something was terribly wrong again.
Rash, mild fever, throat pustules, mouth cankers, extreme fatigue, sore eyes, and tender, bleeding gums were some of the symptoms Laura’s mom, Frances, jotted down on a paper that would soon become part of a dense hospital diary.
The Hillier family had been lucky these past four years. Intensive chemo treatments for acute myeloid leukemia that brought Laura very close to death at age 13 — causing sepsis, a brain infection and permanent vision damage — also brought her into remission. She emerged from hospital brighter than ever, earning leading roles in a Burlington musical theatre group’s production of Mamma Mia and Les Misérables. She’d been a dramatic force on stage since she was 6, quitting ballet, she told Frances at the time, because “it’s not my groove.” She was heading to a provincial competition with her high school drama club when this blitz of sickness invaded.
“I feel like when I had cancer,” Laura confided to her mom.
Emergency room doctors at Juravinski Hospital sent her home two days in a row, saying she probably had infectious mononucleosis — the so-called kissing disease — even though the spot test for virus antibodies was negative.
A children’s oncologist at McMaster Hospital — where Laura was treated the first time — agreed to assess the teen, though, technically, she had aged out of the pediatric system. A bone marrow test confirmed Laura’s suspicion. Her cancer was back.
Dr. Irwin Walker’s unofficial titles of “legend” and “pioneer” go back to 1988, when he became the first person in Canada to perform the first successful bone marrow transplant on a young family doctor from the Orangeville area using an unrelated donor found in a registry.
More recently, the 74-year-old stem cell transplant chief at Juravinski described himself as “a person who, for the last few years, has walked around with chronic rage.”
On May 12, 2015, a month before Laura was admitted to his hospital, Walker and four other transplant chiefs from across the province co-wrote a letter to Cancer Care Ontario begging the government agency to address what they were already calling a “crisis.”
“The net effect of growing wait-lists, patients relapsing and dying while waiting for a transplant, patients getting extra cycles of therapy to try and buy time to get them to a transplant, stress and burnout of transplant team members is a pan-provincial problem,” they warned. “The usual approach of working harder or shifting patients between centres or pushing patients out faster than ideal no longer allows us to get by.”
The hospital programs needed to increase capacity “by at least a third to perhaps as much as half” to eliminate backlogs and have “medically appropriate times to transplant.” By international standards, patients should have their transplant within two to three months of diagnosis. At Princess Margaret Cancer Centre, the wait was eight months.
“The alternative to near-term expanded resources will be a return to out-of-country referrals, a retrogressive practice that will cost more money than properly resourcing Ontario programs and will still result in numerous patients failing to get to transplant because of the long out-of-country referral process,” the letter continued.
Hamilton’s program at the time could provide about five transplants per month. When Laura arrived for treatment, more than 30 other patients were already waiting their turn.
Cancer Care Ontario, the government agency that directs and oversees about $1.5 billion in funding for hospitals, told the Star it has doubled the funding directed to stem cell transplant programs to $19 million from $9 million in recent years.
“It’s not that we’ve not been doing any work,” said Robin McLeod, vice-president of clinical programs and quality initiatives. “It’s a complex disease. What we want to do is obviously decrease the wait-list. We’re just in the process of doing some funding models and capacity planning. Obviously, we’re working on that.”
The health ministry told the Star that the government is investing in infrastructure to improve access to highly specialized stem cell transplantation programs.
Whether the money Cancer Care Ontario had targeted for stem cell programs was actually flowing into those programs is another question. Stem cell transplant chiefs at Princess Margaret, The Ottawa Hospital and Juravinski all told the Star they’ve increased the volume of patients they’re treating without resources to match.
Dr. Hans Messner created Princess Margaret’s stem cell transplant program more than 40 years ago. In his 70s now, the hospital “dusted him off” recently from a three-month retirement to help fix the crisis.
“The big issue is that the funding has to be made available and soon,” he says. “I can tell you, for instance, we have worked very hard here to increase our transplant numbers by 25 per cent, without having any changes in our personnel. It’s not sustainable. Our transplanters, our nurses will burn out and that would make it worse.”
So where have the dollars gone?
At Juravinski, “they were being put into the institution but not necessarily into the ward directly or into the oncology day services area or the specialized out-patient area,” explains Dr. Ralph Meyer, Hamilton Health Sciences’ vice-president of oncology and palliative care. He is also a regional vice-president of Cancer Care Ontario.
“They were being used to support activities that needed funding that included providing supports for transplant patients,” Meyer said, referring to the hospital’s emergency department, intensive care unit and operating rooms. “It’s not going to those services at the present time. We’re emphasizing the wards.”
Laura’s mother, Frances, realized something wasn’t right at Juravinski when a nurse practitioner assigned to Laura talked about starting “consolidation” chemotherapy. The first round of chemo had done its job. By early July, the hospital had found a donor and her cancer was in remission, which is where she needed to be to get on the transplant list.
Hillier said it wasn’t until after much pressing that staff admitted the “consolidation” chemotherapy was medically unnecessary; that it was common practice across Ontario used to buy time until a transplant bed was available.
Once a donor had been found, the Hilliers learned it could be six months before Laura’s turn came in the transplant line.
“You’re rolling the dice with these patients,” Laura’s dad, Greg Hillier, says. “It’s unconscionable.”
The Hilliers and Walker appealed to SickKids, which provides stem cell transplants and has no waiting list. Because Laura was 18, the hospital had to obtain special permissions to provide her a transplant bed.
As per hospital protocol, Sick Kids would also have to redo all the tests required to match her with a donor, adding weeks or months to the process.
Laura decided to use the time and what little strength she had to get out the message that hospitals, the health ministry and Cancer Care Ontario seemed so reluctant to publicly share. With Frances at her side, Laura committed to an exhausting schedule of nearly a dozen media interviews. At the end of July, the Hilliers learned that Sick Kids had agreed to accept Laura as a patient.
In August, Sick Kids suggested Laura undergo more but milder chemo as the donor that was lined up wasn’t available for a few more weeks.
By mid-September, Sick Kids confirmed the donor was “lost,” but provided no explanation, Frances said.
Despite the string of setbacks, Laura remained hopeful.
She was thinking about university. Brock agreed to defer her admission until the following year and honour her $16,000 scholarship. She was also thinking about being a mom one day. She wanted to freeze her eggs since any more chemo would likely destroy her reproductive system. Just after Thanksgiving, a fertility specialist retrieved 13 viable eggs.
There was no time to celebrate. Doctors confirmed the cancer was back; this time the diseased cells had mutated and become stronger.
By November, 80 per cent of the cells in Laura’s bone marrow were leukemic.
Walker told the family Laura would die “within days.”
She was transferred to Juravinski’s intensive care unit. Frances slept on a window bench while hospital staff transfused blood products and other drugs into Laura to stem the uncontrolled bleeding in her lungs.
“I am not going to die,” Laura told Walker. “You’re a smart man, you go figure this out.”
But Laura knew the prognosis was grim.
Before her second intubation within two weeks, aware it might be her last chance to speak, Laura asked to have a few minutes to record two messages. The first, a goodbye to her little sister, Heather. The second, a clip for the media.
In July, Frances sent letters to Premier Kathleen Wynne and Health Minister Eric Hoskins on behalf of Laura and every other patient subjected to the “cruel, inhumane and potentially deadly” waiting times for stem cell transplants. Neither Wynne nor Hoskins replied, Frances says.
Miraculously, Laura recovered after the second intubation, but she was worse for the wear.
“She’s hanging on by her fingernails,” Walker says.
Walker had found a hospital trial in Duarte, Calif., that performed stem cell transplants on patients who were not in remission.
The hospital, City of Hope, agreed to take Laura if Walker could stabilize her for the trip.
On Christmas Eve, for the first time in weeks, Laura pushed herself to stand. She returned to the fourth-floor transplant ward to celebrate the new year.
With damaged abdominal organs and a weak heart, Laura still saw a way through the hell.
But in the nine days it took to finalize her hospital discharge papers and health ministry approval for the California transplant, Laura’s condition deteriorated.
The morning she was scheduled to fly to City of Hope, she awoke with a terrible migraine. Tests showed her brain was bleeding. Walker ordered a new chemo drug as a desperate measure to fight the mutating cancer but it didn’t help.
Laura went into cardiac arrest at 7 a.m. on Wednesday, Jan. 20, 2016. She died three hours later.
Two weeks after Laura’s funeral, Frances and Greg got to work, calling up doctors, health-care staff and hospital administrators across the province to talk about what went wrong.
“We made a promise to our daughter to get this fixed,” Greg says.
One of their first questions to the transplant program physicians: “How on earth did you let it get this bad?”
“We had someone say to us, ‘We were really waiting for a family to go public and say something.’ And I think, ‘Oh my God, what abject failure on their part. How shameful that you’re waiting for the patients that are having to go through this hell to be the ones to change your problem.’ ”
Next Wednesday, the Hilliers are scheduled to meet with Dr. Michael Sherar, president and CEO of Cancer Care Ontario. They will focus on key areas for immediate, transformative change.
“We want accountability and measures for transparency,” Frances says. For starters, Cancer Care Ontario should begin tracking and disclosing wait times for transplants. Also, the public should know how many people die before getting to transplant. Adequate and immediate resources should be made available to boost operational costs, including staffing of stem cell transplant programs and even more basic acute leukemia services, where patients are now waiting weeks to begin their first round of chemotherapy.
“That is a potential death sentence,” Frances says.
“They say they can’t afford to fund these things in Ontario. Do you know how much money Laura cost the system because they didn’t do her transplant? Five rounds of infections, seven weeks in ICU, one-on-one nursing, countless imaging scans and bone marrow biopsies.
“They need to stop planning and start moving.”
Ontario cancer docs beg ministry agency for help
In a letter obtained by the Toronto Star, five stem cell transplant directors from across Ontario lay out the life-and-death crisis for Cancer Care Ontario. Dr. Irwin Walker, one of the physicians behind the memo, said Cancer Care Ontario failed to acknowledge the problems until Burlington teenager Laura Hillier, one of hundreds of cancer patients waiting for transplant, took her concerns to media in July 2015.
Original Article
Source: thestar.com/
Author: Diana Zlomislic
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