Social Policy in Ontario

Ontario opens access to more stem-cell transplants

Posted on May 2, 2016 in Health Delivery System

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TheStar.com – News/Canada – Health Minister Eric Hoskins lifts the ban on U.S. transplants for “relapsed” blood cancer patients and promises to open an extra transplant centre at Sunnybrook.
May 01 2016.   By: Diana Zlomislic, News reporter

Yesterday they were lost causes, left to die. Today there is hope.

Health Minister Eric Hoskins introduced a critical policy change on Sunday that will make an entire group of cancer patients — those who have relapsed after chemotherapy — eligible for life-saving stem cell transplants.
It’s one of several measures Hoskins announced in a statement following an ongoing Star investigation into the systemic collapse of stem cell transplant programs in Ontario hospitals.

The minister, among other things, has committed to:

– Expanding access for stem cell therapy treatment, in Ontario and out of country, where clinically recommended, to leukemia patients who are not in complete remission after chemotherapy.

– Opening a second stem cell transplant centre in Greater Toronto at Sunnybrook hospital to take pressure off of Princess Margaret Cancer Centre, which closed its doors to new transplant patients in March. Princess Margaret’s medical director told the Star it would be “irresponsible” for the hospital to add patients to its eight-month waiting list when they know these patients must receive a transplant within two to three months of diagnosis for the best chance of success.

– Streamlining the convoluted referral process for patients sent out of country, a process that takes weeks as Cancer Care Ontario stipulated that a special review committee must vet all cases before funding is approved.

– Creating a ministerial task force to provide the government with “immediate and ongoing advice.” (A ministry spokesman could not say which experts have been assigned to the committee.)

Since last fall, nearly 200 of this province’s sickest patients, including those with blood cancers such as leukemia and immunologic disorders, have been referred to American centres for allogeneic transplants — using stem cells from an unrelated donor — at a projected cost of $100 million (U.S.) because programs in Ottawa, Toronto and Hamilton don’t have the space or staff to treat them. Since fall 2015, only 19 patients have actually received a U.S. transplant.

In late January, Sharon Shamblaw, 46, a stay-at-home mom from St. Mary’s, Ont., travelled to Buffalo for a scheduled transplant — her best shot at surviving acute myeloid leukemia. Hours before she was to be admitted, tests showed the cancer, kept at bay for five months by her Ontario doctor through chemo, had returned. Since the government agreed to fund out-of-country treatments only for patients “in remission,” the transplant was suddenly off the table. Two weeks ago, she entered palliative care at home.

In a story about Shamblaw published last week, Cancer Care Ontario told the Star “it is considered experimental to perform transplants on patients that are not in remission.”  It turns out that’s not exactly true.

Cancer Care Ontario’s own consensus guidelines, submitted by expert physicians in July 2015, indicate that offering a transplant to a leukemia patient “not in remission” is “standard” practice.

While the odds of long-term survival are lower when a patient has relapsed or not responded to chemotherapy at all, a five-year study at Roswell Park Cancer Institute, where Shamblaw was to have received her transplant, showed a 20- to 25-per-cent survival rate for such patients.

“When somebody is in remission, the whole reason why they’re having a transplant is not because the leukemia is all gone,” said Dr. Philip McCarthy, director of Roswell’s blood and marrow transplant centre. “The leukemia is still there. It’s just you can’t find it with our current detection methods.”

The level of detection for leukemia is about a billion cells — the size of a sugar cube, McCarthy explained.The trick is to treat relapsed patients while the number of diseased cells is relatively low.

“If you try to do a transplant with a high cancer burden, say a trillion cells, it’s not going to work,” McCarthy said. “You’re asking the donor cells to eradicate all those leukemia cells, and there are too many of them.”

In 2008, the Ontario government’s own quasi-judicial tribunal, the Health Services Appeal and Review Board, established the precedent that providing an allogeneic transplant for a relapsed leukemia patient was not experimental.

“It is excellent that the minister has finally forced Cancer Care Ontario and the hospitals to face that fact, but that is small comfort to the families of the dead,” said Amir Attaran, a professor in the faculties of medicine and law at University of Ottawa.

“This is not a singular mistake that you can attribute to aberration,” Attaran said. “This was systemic failure to obey the standard of care.”

Just how many patients are affected by this policy change is a secret Cancer Care Ontario still insists on keeping.

On Friday, a government spokesman told the Star the health ministry would compel Cancer Care Ontario to release the number of patients who have relapsed or died while awaiting a transplant. The Star asked for the data last week to try to learn why so few patients approved for transplant have actually had one.

Cancer Care Ontario now says the numbers are “too small” to report and that releasing them would risk identifying patients.

One transplant doctor told the Star last week that four patients on his roster alone died while waiting for their approved U.S. transplant.

For more than a decade, physicians at Princess Margaret, Juravinski Hospital in Hamilton and The Ottawa Hospital — the only three Ontario centres equipped with highly specialized staff and space to provide allogeneic stem cell or bone marrow treatments — have warned Cancer Care Ontario this crisis would happen without immediate intervention.

Dr. Richard Wells, a clinician-scientist at Sunnybrook, described the situation as a “slow-motion train crash.”  One of his chief concerns now is seeing that his patients receive the urgent care they need. The referral process, he said, “is bonkers.”

While Wells used to directly refer patients to Princess Margaret, now he must send them to The Ottawa Hospital, where an expert will determine whether a transplant is medically appropriate and which centre they should go to.

The province has struck agreements with Roswell in Buffalo, the Cleveland Clinic, and Karmanos Cancer Institute in Detroit. Each transplant costs about $500,000 (U.S.), which is two to three times the cost in an Ontario hospital. The treatment requires patients to be in hospital for a month and within a 15-minute drive of the hospital for two more months, usually at a nearby hotel, for regular checkups. There is a high chance at this stage that the donor cells will attack the patient’s body, a potentially fatal complication if not immediately treated. The patient is also asked to travel with a full-time caregiver who can help administer oral and intravenous medications.

“I sent a referral to Ottawa two or three weeks ago and we’ve heard nothing,” Wells said. “No one can tell us when this patient will be seen. It’s a little bit of a black hole. It feels crazy to be waiting with no hint of what the timeline will be. It’s tough on the patient, it really is.”

The average wait for a consult in Ottawa, based on the experiences of his “first wave” of patients, Wells said, is about three weeks.

“I hope they understand the referral process is absolutely crucial. Really, the referral process is all we can do for these patients right now in Ontario.  “If that sole task that we still have power to do we cock-up, it will be quite tragic.”

Shamblaw’s first-born daughter, Amanda, 26, had prepared to move to Buffalo for three months to be her mother’s primary caregiver.  Doctors in London, Ont., and Buffalo confirmed Shamblaw’s body is now too full of diseased cells to survive a transplant.

“We all still held hope up until now,” Amanda said. “Now we just have to work to prevent other people from suffering this unnecessary fate.”

< http://www.thestar.com/news/canada/2016/05/01/ontario-opens-access-to-more-stem-cell-transplants.html >

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