Dozens of patients in New Brunswick suffering from serious unexplained neurological symptoms say they no longer believe that the province’s top doctor can get to the bottom of what’s making them sick and are calling on Canada’s public-health agency to step in and take over the investigation.
In a letter sent to New Brunswick’s Acting Chief Public Health Officer Yves Léger last week, a representative for the patients decried the province’s inaction and lack of urgency in probing the root causes and finding interim treatments.
The patients also defended a local neurologist, Alier Marrero, one of four doctors who initially alerted health officials about the issue in 2020, and whose concerns have been largely ignored by the province’s health agency, according to correspondence obtained by The Globe and Mail.
The neurological symptoms have affected hundreds of people, according to Dr. Marrero, and at least 39 of them have died.
“It’s a matter of life and death, literally,” said Stacie Quigley Cormier, who penned the open letter signed by 48 patients and family members. “They can be saving lives potentially and so it is inexcusable that they’re not moving forward to find solutions.”
The patients’ letter was also sent to Canada’s Chief Public Health Officer Theresa Tam, federal Health Minister Mark Holland and New Brunswick’s premier-designate Susan Holt, who pledged last month that she would launch a rigorous scientific investigation into what’s causing the symptoms if she won the election, which she did by a landslide last week.
On Sunday, Ms. Holt said she will have more to say once her team is sworn in on Nov. 2. “Our government will be committed to getting more answers on this terrible situation for the patients and their families,” said her spokesperson Katie Beers in an e-mail.
The letter states that it’s clear Public Health New Brunswick has instigated a bias against Dr. Marrero and his patients. “It is our right to have the concerns of our physician taken seriously and without further delay,” it said.
Neither Dr. Léger nor Public Health New Brunswick responded to requests for comment. Dr. Marrero’s employer Vitalité Health Network did not approve a request for an interview with him.
Tense correspondence over the past few months between Dr. Marrero and Dr. Léger shows miscommunication and disagreements on the physician’s reporting duties and what needs to be done about the growing number of undiagnosed patients, documents obtained by The Globe show.
Dr. Alier Marrero poses for a portrait at his home on the outskirts of Moncton, N.B., on June 17, 2023. Dr. Marrero reported 338 cases of undiagnosed neurological disease through a standard one-page form and an additional 100 are likely to be reported soon, he told Dr. Léger in early August.Chris Donovan/The Globe and Mail
New Brunswick health officials first raised the alarm in 2021 about a mysterious brain disease afflicting 48 residents of all ages in the province. A multidisciplinary team of provincial and national health officials convened but soon, provincial officials told the Canadian Institutes of Health Research (CIHR) to stand down and declined $5-million in emergency research money. New Brunswick said the pause was needed while it dove deeper into existing cases.
A provincial review in February, 2022, concluded there was “no evidence of a shared common illness or of a syndrome of unknown cause.” It recommended that any future cases be reviewed by a second specialist. Patients have criticized the review’s methodology and conclusions, saying they were never examined by provincial review committee members and that the diagnoses didn’t fit their circumstances or had already been ruled out through tests.
They were also upset that no additional testing was done on federal experts’ hypothesis that the illnesses may be environmental.
Meanwhile, Dr. Marrero has told the province that the number of cases continues to grow. He reported 338 cases of undiagnosed neurological disease through a standard one-page form and an additional 100 are likely to be reported soon, he told Dr. Léger in early August.
He said many are relatives of other patients or from the same communities, under the age of 45 and span seven provinces.
Public Health Agency of Canada spokesperson Mark Johnson said PHAC would lead an investigation and co-ordinate a response when there is a high potential for or evidence of cross-jurisdictional impact, including cases of illness formally reported by multiple provinces and territories. But so far, he added, no other provinces or territories have reached out about similar cases.
According to the correspondence, Dr. Marrero has repeatedly asked the province to conduct testing related to the common industrial herbicide glyphosate and blue algae toxins, which he believes could be linked to the disease. He said “high levels of unusual antibodies” in numerous patients also warrant further investigation.
The correspondence shows Public Health New Brunswick said Dr. Marrero needed to submit more paperwork before it could act on his toxicologic inquiries.
Meanwhile, Dr. Marrero has been asked to also fill out a second, more detailed two-page list of questions for each patient, which he says takes two to four hours to complete per patient. As of March, only 29 were completed, according to a letter from Dr. Léger.
Dr. Marrero did receive some support from PHAC epidemiologists who were sent to Moncton in 2023-2024. However, hundreds of forms were subsequently sent back to him for approval with missing information, he said.
Provincial authorities say they remain eager to receive Dr. Marrero’s submissions to be able to further analyze the information.
Over the past year, two federal scientists shared some of Dr. Marrero’s concerns.
CIHR scientific director Sam Weiss alleged that the best interests of patients haven’t been at the forefront of the province’s decision-making and “is part of a larger mystery around the intentions of government’s focus on politics, power and process – over the humanity of care,” he wrote in a May letter, possibly to a patient, obtained by The Globe.
“You and the 350 others deserve so much more.”
Dr. Weiss and CIHR spokesperson Kristy Cross said in a statement that they await requests for research support from New Brunswick.
Michael Coulthart, head of the PHAC’s Creutzfeldt–Jakob Disease Surveillance System, who was involved in the early days of the investigation, has said he believes something real is going on that cannot be explained by the alleged bias or personal agenda of one neurologist.
“My strongest hypothesis is that there is some environmental exposure – or perhaps a combination of exposures – that is triggering and/or accelerating a variety of neurodegenerative syndromes,” he wrote in an October, 2023, e-mail to another PHAC employee. He added that this complex scenario allowed politicians “to conclude nothing coherent is going on.”
Dr. Coulthart declined to elaborate on his letter.