Federal health officials weren't aware N.B. mystery cluster autopsy findings were made public

The Public Health Agency of Canada says it didn't know an Ottawa neuropathologist working for the department had published autopsy findings online, concluding eight people who were thought to have a mystery neurological illnessdid not die from something new and unknown.

The federal agency "did not approve the use of the data obtained from the autopsies for this purpose," a spokesperson said in an emailed statement.

"Dr. Jansen published his findings without informing [Public Health Agency of Canada] of his intention to do so," spokesperson Eric Morrissette wrote in an emailed statement.

"[Public Health Agency of Canada] reserves the right to take corrective action, to ensure that this kind of situation does not recur and, if necessary, to remedy any resulting misinterpretation of facts in the public health context."

Dr. Gerard Jansen had been contracted by the federal health agency to do the work.

The information was published in an abstract from Jansen, which was posted on the Canadian Association of Neuropathologists' websitethis month. CBC News hasn't seen the full body of research.

The abstract says the patients died from known diseases, such as cancer, Lewy body dementia and Alzheimer's disease, suggesting the patients "represent a group of misclassified clinical diagnosis."

But the federal agency took issue with the idea that the patients may have been "misclassified."

"[Public Health Agency of Canada] does not dispute the quality of Dr. Jansen's neuropathology work, nor the accuracy of his diagnostic conclusions on the individual cases he has examined," the spokesperson wrote.

"As these patients passed away without a clinical diagnosis, it is difficult to interpret the statement that the cases were diagnostically 'misclassified.' "

Both the agency and Jansen declined interview requests.

But in an emailed statement, Jansen suggested the federal agency doesn't own the data, which was published in an abstract presented at a recent annual meeting of the association.

Jansen said the data was shared with about 20 to 30 colleagues in attendance to establish the validity of his conclusions. He said they "unanimously concurred with my findingsin all eight autopsies and my conclusions [regarding] this cluster."

"As a result, the sharing at a private professional meeting is to be seen as a quality assurance event, something [Public Health Agency of Canada]should support , I would think, and the fact that the abstract was as an unintended (COVID) side-effect externally available with some good Googling is of course unfortunate," Jansen wrote in the email.

Provincial health authorities first raised alarm bells about the cluster of patients with an unknown neurological illness earlier this year.

• The Fifth Estate investigates N.B's mystery illness

But now public health officials are questioning the validity of the idea of a mystery illness, after referencing the autopsy results on Wednesday. An epidemiological study released on Wednesday didn't find any significant links between members of the cluster.

"To date, there has been no evidence of unknown syndromes identified in the autopsy reports," said Dr. Susan Brien, who is a Horizon Health executive and co-chair of the government committeeinvestigating whether members of the 48-person cluster have an unknown neurological illness.

That the findings were posted online was also news to New Brunswick Health Minister Dorothy Shephard, who said on Wednesday that health officials found the information "by accident."

• Eight people from N.B. mystery illness clustermay have been misdiagnosed, new research says

Dr. Alier Marrero, who has treated almost all the patients who make up the cluster, also told Radio-Canada that he was surprised to see the findings shared online.

"I was also a bit surprised to see there was a communication on our patients' pathology without consulting me or other doctors involved," Marrero said earlier this week.

In his email, Jansen also suggested the federal public health authorities don't support his conclusions about the cluster.

"That neither Dr. Marrero nor [Public Health Agency of Canada] seem to support my findings or conclusions, is not unexpected," Jansen wrote.

"Still, neither of them are neuropathologists or have currently a neuropathologist employed (I have severed my direct contract with [Public Health Agency of Canada]). As mentioned above nearly 30 neuropathologists have seen the material and support both findings and conclusions; I am not sure what one needs more."

Questions swirl around who was responsible to provide autopsies to families

Some family members of patients who are part of the cluster have also questioned why they did not know about the findings before they were made public.

When asked why results weren't given to families sooner, Brien suggested on Wednesday that Marrero should have done that.

• Doctor who sounded alarm on mystery disease sidelined from province's investigation

"It is the responsibility of the referring physician when he or she receives the report of an autopsy to share that information directly with the patient and the family," Brien said.

"The hospital or regional health authorities have no authority to disclose that confidential information."

The federal health agency also suggested in its statement that it was Marrero's responsibility, saying it's standard to provide autopsy results as soon as they're available "directly to the referring physician responsible for the patient's care as well as the collaborating local pathologist."

This was the case for the autopsies completedin New Brunswick in 2020 and 2021 by the agency'sCreutzfeldt-Jakob Disease Surveillance System,the statement says.

"It is the responsibility of the physician to inform provincial public health officials of these diagnoses. All human prion diseases are provincially reportable and nationally notifiable in Canada."

Marrero was not available for an interview on Friday.

"I think that battles over autopsies should not be an issue that is in the media," Marrero said in French earlier this week.

Province didn't ask for autopsy results until September, feds say

On Wednesday, Shephard wrote a letter to federal Health Minister Jean-Yves Duclos, expressing concerns about "a lack of timely access to information held by the CJD Surveillance System (CJDSS) about patients in New Brunswick" who are part of the mystery illness cluster.

"Public Health finally received the autopsy results on Sept. 24, a total of 7 months after its first request back in February," Shephard told reporters Wednesday.

But the federal public health agency told CBC News that provincial health officials didn't request "final autopsy reports" until late September 2021.

A committee created by Public Health is doing a clinical review of all 48 members of the cluster. They expect to release that report in January.