Just how many of Ontario’s sickest patients fell off a controversial, $100-million waiting list for life-saving stem-cell transplants in U.S. hospitals is a secret Cancer Care Ontario said it is “committed” to keeping.

“They’re covering up,” said Amir Attaran, a professor in the faculties of law and medicine at the University of Ottawa. “It is a cynical abuse of privacy law, to shield a callous and incompetent agency from disclosing how many Ontarians its inattention and bad management have killed. Simple as that.”

Ontario’s privacy commissioner also took issue with Cancer Care Ontario’s rationale.

“It is not apparent to us how patients would be identifiable from a raw number in these circumstances,” Brian Beamish told the Star in an email.

Beamish consulted with Cancer Care Ontario before the government agency doubled down on its decision to withhold statistics on patients who relapsed or died while waiting for an American stem cell transplant.

An ongoing Toronto Star investigation revealed that since the fall of 2015, more than 200 Ontario patients with various forms of blood cancers, such as leukemia, and immunologic disorders were referred by Ontario hospitals for out-of-country care because of a systemic capacity crisis in the province.

There are too many patients in need of allogeneic stem cell transplants — new immune systems, essentially, delivered through donated bone marrow or stem cells — and not enough beds, staff or funding to offer equal-access urgent care.

International standards dictate that patients requiring such a transplant generally get one within three months of their initial diagnosis, for the best chance of success. Canada’s largest cancer centre, Princess Margaret Cancer Centre, formally shut its doors to new stem cell transplant patients in March because its wait list for treatment had grown to eight months.

A spokeswoman for the hospital confirmed that 147 of its patients have been referred for U.S. transplants in the past seven months.

The Ontario government has approved 191 patients for funded transplants in Buffalo, Detroit and Cleveland at a cost of roughly $500,000 (U.S.) per patient. Only 19 people have received the treatment so far.

Sharon Shamblaw, a 46-year-old mother of three in St. Marys, Ont., arrived at Roswell Park Cancer Institute in Buffalo in late January of this year, five months after being diagnosed with acute myeloid leukemia. Hours before she was to be admitted, diagnostic tests revealed she had relapsed.

The government’s contract permits U.S. hospitals to treat only patients who are in remission from cancer, even if doctors believe a transplant is still a curative option. Shamblaw was ordered back to Ontario. She is in palliative care at home, told she will die within days or weeks.

The Star wanted to know how many other patients, province-wide, relapsed or died before getting their best shot at survival.

This is how Cancer Care Ontario answered the question, in a written statement forwarded by spokesman Marko Perovic:

“As an agency of the Ministry of Health and Long-Term Care, CCO has to balance competing legal obligations; namely, its obligations under the Freedom of Information and Protection of Privacy Act to promote government transparency and its obligations under the Personal Health Information Protection Act, 2004 to protect the privacy of Ontarians and to maintain the confidentiality of their information. CCO does not report publicly on information about small numbers of patients that has the potential to be used to re-identify an individual. As CCO is committed to protecting personal privacy and mitigating risk of re-identification, CCO has determined in this case that it will not disclose the number in question.”

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

“There is absolutely no way they can withhold this as personal information, none,” said Attaran, the Ottawa lawyer and a trained biologist. “This is an absolute fraud on the law. Cancer Care Ontario is acting in bad faith and has no legal support whatsoever for its position. Anyone with a modicum of legal skills would know this is nonsense.”

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 treatments using stem cells or bone marrow from donors unrelated to patients — have warned Cancer Care Ontario this crisis would happen without immediate intervention.

A 2007/2008 CCO report led by front-line doctors showed the government agency was shortchanging hospitals on the actual costs of treatment. For example, an allogeneic transplant in Ontario at the time cost about $130,000 (including the lab work required to find a suitable stem cell donor). The funded rate was $80,000.

In a May 2015 letter to Cancer Care Ontario obtained by the Star, five transplant program directors wrote of their hospitals’ “ethically-not-right” rationing of treatments, “patients relapsing and dying while waiting for a transplant,” and “patients getting extra cycles of therapy to try and buy time to get them to a transplant.”

Without an immediate expansion of resources, the doctors wrote, the only alternative is out-of-country referrals — a “retrogressive practice that will cost more money . . . and still result in numerous patients failing to get to transplant because of the long out-of-country referral process.”

Conservative health critic Jeff Yurek (Elgin-Middlesex-London) said his office has received “so many emails” from families affected by this crisis.

Some have gone to the U.S. for transplant, come home with infection, which is common for the first two years post-transplant as the body’s new immune system settles in, and been forced to return to the U.S. for vital treatment because none is available in Ontario. Others have reached out to Yurek, frustrated that they’re still waiting.

“Releasing the numbers of those who have relapsed because of the breakdown in the system would be important in determining how widespread this is,” Yurek said.

“It seems the ministry is in protective mode right now to ensure the damage to their failings in the health-care system is minimized.”

NDP health critic France Gélinas (Nickel Belt) told the Star she has heard “gut-wrenching” stories from constituents across Northern Ontario desperate to access transplants.

“It’s difficult for the clinician and the patient,” Gélinas said. “Every day is a time bomb. They put their patients through hell to put them on a wait-list to nowhere.”