​Advocates don’t trust N.B. health minister to do fair investigation into mystery illness

An advocate for New Brunswickers suffering from unexplained neurological symptoms says a letter obtained by CBC News suggests Health Minister Dr. John Dornan wasn’t truthful about his role in the removal of a Moncton neurologist from his post at the clinic treating many of the patients.

The letter dated July 4, 2022, shows it was Dornan — then CEO of the Horizon Health Network — who informed Dr. Alier Marrero his participation in the Moncton Interdisciplinary Neurodegenerative Diseases Clinic would soon cease.

“Despite our repeated attempts to inform you of our expectations and the deficiencies in your performance, you have not demonstrated a sustained ability to meet our expectations,” Dornan wrote.

Dornan is now overseeing Premier Susan Holt’s pre-election pledge as Opposition leader to launch a transparent scientific investigation into the “mystery illness” that Marrero says is making more than 500 people in New Brunswick and six other provinces sick.

The mandate letter Dornan got when he became minister includes “a scientific review into the mystery brain disease.”  

Advocate Stacie Quigley Cormier of Dalhousie Junction says she asked Dornan during a meeting last month whether he had “any involvement whatsoever” in Marrero’s removal from the MIND Clinic at the Moncton Hospital.

“He said unequivocally, ‘No,’ and he repeated it about three times,” she alleged.

Knowing now that Dornan was behind Marrero’s removal “raises a lot of concerns” about whether he can lead an objective investigation, Quigley Cormier said.

“We’re calling on Premier Holt to step in and to announce publicly that Public Health Agency of Canada is going to take the scientific lead on this because there’s a conflict of interest with members around the table that we can’t be satisfied with an investigation that is led by them,” she said, referring to Dornan and Chief Medical Officer of Health Dr. Yves Léger.

Holt, Dornan and Léger did not respond to requests for interviews. Nor did Marrero.

1st case dates back 10 years

It was early 2021 when the public learned that Public Health was monitoring more than 40 New Brunswick patients with symptoms similar to those of Creutzfeldt-Jakob disease, a rare and fatal brain disease. The first case dated back to 2015, according to an internal memo.

Marrero, who sounded the alarm about a possible mystery disease, said at the time it was not considered genetic, based on preliminary data, and could be contracted from water, food or air.

“It most likely is a new disease,” Dr. Jennifer Russell, then-chief medical officer of health, told reporters.  

The former Higgs government launched an investigation into the cluster of 48 patients, aged 18 to 85, located primarily on the Acadian Peninsula and in the Moncton region. Quigley Cormier’s stepdaughter Gabrielle Cormier, 23, was one of the youngest.

The province consulted experts from both levels of government, but within three months put meetings with federal experts and more than $5 million from the Canadian Institutes of Health Research on hold. Instead, it created its own oversight committee.

In February 2022, that committee concluded the cases, showing symptoms ranging from painful muscle spasms and hallucinations to memory loss and behavioural changes, did not have a common cause. 

The committee found “potential alternative diagnoses” for 41 of the patients, including Alzheimer’s disease, Lewy body dementia, post-concussion syndrome and cancer, Russell said.

Paperwork demands

Marrero was sidelined from that investigation. His subsequent removal from the MIND Clinic sparked questions about his abilities and tainted his reputation, said Quigley Cormier.

It also meant patients like her stepdaughter had to leave the clinic and its interdisciplinary care if they wanted to stick with Marrero and see him at Vitalité’s Dr. Georges-L.-Dumont hospital in Moncton instead, she said.

No details about why Marrero was removed are provided in Dornan’s letter, but Health officials have said the neurologist “struggled to fulfil his legally required notification duties.”

Under the Public Health Act, medical professionals must report notifiable diseases, including certain “unusual illnesses” to the department by filling out paperwork.

Marrero asked for help with the one-page notifiable diseases and events notification forms but alleges he was instead threatened with disciplinary action. The Health Department subsequently created enhanced surveillance forms, requiring additional information.

Meanwhile, Gabrielle’s health,  “like other patients’ health, continues to decline,” Quigley Cormier said. She said Gabrielle has rare antibodies affecting her vision, balance and central nervous system.

Seeks recusal of chief medical officer

Lori Ann Roness, a patient advocate in Sackville, wrote an open “call to action” letter to Holt and Dornan last month, signed by more than 70 patients and family members.

She asked the province to request immediately that the Public Health Agency of Canada lead the investigation “to ensure independent scientific integrity and credibility,” and to secure the money offered by the Canadian Institutes of Health Research.

She also asked that Léger recuse himself from the investigation for what she called a “failure to act in the best interest of public health.” Roness did not elaborate in the letter but refers generally to a “bias” against Marrero and a lack of resources.

In a followup letter last week, obtained by CBC News, Roness detailed concerns about the “accuracy of statements” Léger made in a Feb. 25 letter to First Nations chiefs about the “neurodegenerative disease of unknown origin.”

Roness, who works with First Nations but does not speak on their behalf, wrote that Léger implies “the idea of potential environmental causes lies exclusively with Dr. Marrero.”

“Actually, Dr. Marrero has been advocating for independent scientific investigation that considers all possibilities, including but not limited to, environmental factors,” wrote Roness, who tested high for copper after her father, Ralph, 80, developed an unexplained tremor in 2023 and tested high for arsenic.

Marrero has warned that some patients’ blood work showed elevated levels for compounds found in herbicides, such as glyphosate, which is used in agriculture and in industrial forestry operations, and said more testing should be done to rule out environmental toxins, such as BMAA, which is produced by blue-green algae.

But Roness contends the Public Health Agency of Canada — not Marrero — was first to suggest considering environmental factors.

“Focusing solely on Dr. Marrero makes this issue about him, when it is really about the patients. And more importantly about the province as a whole and what is going on here.”

She noted the blood and urine samples of Marrero’s patients are tested by independent labs in Ontario, Quebec, and the Mayo Clinic in the U.S., among others. 

Patient total climbs to 507, deaths reach 50

Roness also takes issue with Léger’s statement that Public Health doesn’t have enough information to assess claims about potential environmental exposure.

According to her, Marrero has submitted 381 notifiable diseases and events notification forms, and 227 enhanced surveillance forms, as of her March 6.

“Those are just the people [Marrero] knows about;” Roness said in an interview. There could be others, including people who don’t have a doctor to refer them to specialists.

Marrero wrote a letter Feb. 24 to Dornan, Léger, federal Health Minister Mark Holland and Canada’s Chief Public Health Officer Dr. Theresa Tam in which he said the number of patients suffering from unexplained neurological symptoms has increased to 507, in seven provinces. These include New Brunswick, Nova Scotia, P.E.I., Newfoundland, Ontario, Quebec and Alberta.

About 127 of them are still under investigation, he wrote. Three more patients have died since he wrote to Dornan on Jan. 30, raising the death toll to 50. 

Marrero said his office has provided “more than ample evidence” that an “urgent, thorough, and multidisciplinary investigation” is needed, yet he continues to face significant paperwork and has received no update on the investigation.

‘How many more people have to die?’

Roness questions why the forms Marrero has submitted to date aren’t sufficient to start the probe now, and whether the possibility of chemicals, pesticides and herbicides being a factor has created a “reluctance to investigate further.”

“How many more people have to die? Are they waiting for a court case?” she asked.

She wants politicians and high-level bureaucrats to acknowledge something is wrong.

“Something is fishy in the province of New Brunswick, and I would like the decision-makers to get in touch with their humanity and ask themselves, if their loved one or themselves had an arsenic reading in the thousands when it should be under 60, what would they do?”

Feds say N.B. is lead

Public Health Agency of Canada spokesperson Tammy Jarbeau said completing the provincial notification process and related data collection is the necessary next step to inform any review. 

“Until data collection and fulsome analysis is complete, any comments made in the absence of this remains speculative,” she said in an email.

But New Brunswick is the lead jurisdiction, Jarbeau said.

“PHAC continues to maintain an open dialogue with New Brunswick … and remains ready to provide additional support.”

Canadian Institutes of Health Research, for its part, “remains ready to provide research support should a request be made by those leading the investigation in New Brunswick,” said spokesperson David Coulombe.