Neuropathologists across Canada are urging the federal government to revive autopsy services for people suspected of having Creutzfeldt-Jakob disease, the fatal brain illness best known for its links to mad cow disease.
As The Globe and Mail previously reported, the Public Health Agency of Canada abruptly cut off funding in February for CJD autopsies and biopsies performed at a University of Ottawa lab to save money.
The facility had for decades been the main lab accepting brains and tissue samples potentially infected with CJD, a transmissible and deadly neurodegenerative disorder.
Now the Canadian Association of Neuropathologists, which represents specialists who study and diagnose diseases of the nervous system, is asking PHAC to meet with them to find a way to bring the service back.
“Eliminating funding for this centralized program is short-sighted,” the association wrote in a letter obtained by The Globe. “Replicating equivalent infrastructure across provinces and territories would be more expensive and time-consuming. Even if decentralization were preferred, building the required expertise and facilities would likely take years – leaving patients since Feb. 13, 2026, without access to essential diagnostic services.”
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The neuropathology association sent the letter on March 26 to Howard Njoo, then Canada’s interim chief public health officer, and to the chief medical officers of health for every province and territory.
Veronica Hirsch-Reinshagen, the secretary-treasurer of the Canadian Association of Neuropathologists, was shocked when she learned the autopsy program would be scrapped.
“I didn’t understand why they were doing it,” she said in an interview Thursday from Vancouver, where she is a practising neuropathologist. “What was the rationale behind it?”
Cynthia Hawkins, president of the neuropathology association and a Toronto neuropathologist, said in the same interview that she was most surprised by the fact that PHAC axed the program without talking to neuropathologists about what might replace it.
“It seemed to be a decision that had been made without consulting the neuropathology community, which had been at the front lines for doing this surveillance, certainly at postmortem, for like 30 years,” Dr. Hawkins said.
Karine LeBlanc, a spokeswoman for PHAC, said the agency is currently preparing a response to the neuropathologists’ letter. She emphasized that the agency’s other CJD surveillance activities will continue; only the federal funding for brain autopsies and biopsies has been cut.
Creutzfeldt-Jakob disease is an incurable disorder caused by infectious misfolded proteins known as prions. CJD is rare, with fewer than 500 cases confirmed in Canada since 2020.
Most are a kind known as sporadic CJD, where normal proteins in the brain misfold into infectious abnormal proteins for no apparent reason. A small number of cases are caused by an inherited genetic mutation.
The least common, but most famous, type of CJD is variant CJD, the type caused by eating beef from cows infected with the animal prion disease bovine spongiform encephalitis – better known as mad cow disease.
PHAC told The Globe in February that there was less need for brain autopsies because modern, reliable lab tests can now detect CJD in patients while they’re still alive.
But the neuropathologists noted in their letter that the tests aren’t foolproof.
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The letter cited a recent case in which a pathologist identified at autopsy a case of inherited CJD in a person who had been “ruled out to have CJD” by earlier lab testing.
The letter also pointed out that inherited cases of CJD frequently go undetected because the disease progresses too rapidly for blood samples to be drawn and sent for genetic testing.
PHAC said in February that the CJD brain autopsy and biopsy program had an annual budget of up to $1.3-million a year.
But Gerard Jansen, the University of Ottawa neuropathologist who ran the CJD autopsy program, told The Globe that the federal government only paid that amount to the lab if the group conducted 100 brain autopsies or biopsies in a year.
The actual number of autopsies was usually about half that, meaning the federal outlay was significantly less than budgeted. Dr. Jansen said in an e-mail Thursday that the actual federal contribution barely covered the operating costs of the program, especially in the last four years.