A Moncton neurologist who raised alarm bells about young patients with unusual, progressive neurological symptoms will no longer work at a clinic treating many of his patients.
The province's former health minister once pointed to Dr. Alier Marrero as the person who was going to get to the bottom of what was previously described by public health officials as a "cluster of neurological syndrome of unknown cause."
Marrero identified 46 of the 48 patients the government included in the cluster. But as of Aug. 1, he will no longer work at the Moncton interdisciplinary neurodegenerative diseases clinic, known as the MIND clinic, at the Moncton Hospital, Horizon Health confirmed.
In a statement, Dr. Susan Brien, Horizon's vice-president of medical, academic and research affairs, said patients can choose to see Marrero at Vitalité's Dr. Georges-L.-Dumont University Hospital Centre in Moncton, or they can be assigned a new neurologist at the MIND clinic and receive a new assessment.
"Ongoing followup at the MIND clinic will also include support from the interdisciplinary team consisting of two geriatricians, two neurologists, two registered nurses, a neuropsychologist, a social worker, a researcher, and associates in psychiatry, speech language pathology, physiotherapy, and occupational therapy," Brien wrote.
Brien's statement doesn't say why Marrero will no longer be at the clinic. When asked, Brien said Marrero works for Vitalité and the Dumont Hospital is his primary practice. She said he will continue to have privileges at the Moncton Hospital.
"We offer our appreciation to him for his collaboration," Brien wrote. "If you would like to discuss the details of his practice, it would be best to reach out to him directly."
Marrero didn't provide an interview.
Province says there is no unknown illness
A committee made up primarily of neurologists from New Brunswick reviewed records from the 48 patients in the cluster.
The committee, which didn't include Marrero, found that while some patients have unusual symptoms, they don't have a common, unknown illness.
"The oversight committee has unanimously agreed that these 48 people should never have been identified as having a neurological syndrome of unknown cause and that based on the evidence reviewed, no such syndrome exists," Chief Medical Officer of Health Dr. Jennifer Russell said in February.
"Public Health concurs with these findings, but I stress again, this does not mean that these people aren't seriously ill. It means they are ill with a known neurological condition."
Many of those patients continue to receive treatment at the MIND clinic, which opened in April 2021 to assess and treat "patients suffering from rapid or early-onset cognitive decline."
"Some of these patients have serious known conditions that are impacting their lives in profound ways and several patients need followup testing, assessment, and care," the clinic's website says.
Some patients to follow Marrero to Dumont
But now, some patients will have to leave the MIND clinic to continue to see Marrero.
They include Derek Cuthbertson, who was told he was a member of the 48-person cluster, and his stepdaughter, Jillian Lucas.
For more than four years, Cuthbertson has been struggling with symptoms ranging from dizziness and memory problems, to trouble speaking and forming words.
"A lot of times, I'll try to speak and I know the word I want to use, but it won't come out," Cuthbertson said.
Lucas, who lives in the same Riverside-Albert home as her stepfather, began seeing Marrero after she felt she was having symptoms similar to Cuthbertson's, including memory and balance problems. Lucas had a concussion several years ago but said Marrero doesn't believe it explains all of her symptoms and test results.
Both plan to continue to see Marrero at the Dumont, but it means they'll lose access to the other specialists at the MIND clinic.
"I have full trust and faith in him and I follow him," Lucas said.
Steve Ellis also plans to move his 64-year-old father's care to the Dumont to follow Marrero. He fears it will take longer to get an appointment now that Marrero will no longer be at the MIND clinic, and feels time is of the essence for his father, Roger.
"They're stripping us of what little dignity we have left by trying to make Dr. Marrero look like a bad guy and try to make us look like there's nothing wrong with us," Ellis said.
He wishes families were given the option to continue to see both Marrero and access services at the MIND clinic, but Ellis doesn't want any other neurologist to treat his father, who is also among the 48.
"They owe it to us at the very least to tell us why he's being removed," Ellis said.
"Obviously, it would be better if they just reversed their decision, which is what our goal is: have them put him back into the MIND clinic. But if they're not going to do that, you need to tell us why he was removed, period."
Marrero sidelined from investigation
The change at the MIND clinic comes a year after the province sidelined Marrero from its investigation into the cluster.
In April 2021, around the same time the MIND Clinic opened, former health minister Dorothy Shephard said Marrero was leading a steering committee looking into the illness.
Even after the oversight committee was created in May, and Marrero wasn't part of the committee, Shephard suggested Marrero would still play a key role.
"We have put in place an oversight committee to assist Dr. Marrero with this process and to ensure that we're covering all of our bases and all of the information that [patients] give, we want to make sure we put expert eyes on it to do the very best," Shephard said on May 27.
But by last June, after months of meeting regularly with Public Health officials, Marrero was shut out.
"All of a sudden, in the month of June, we decided that it's New Brunswick, with the created committee, which would take charge of everything and we were kept outside of that," Marrero told Radio-Canada's Enquête last year.
In October, government officials went a step further to distance themselves from Marrero, saying the investigation needed to be "bigger than just one neurologist."
"Dr. Marrero was not the lead on this investigation," Shephard said at a news conference.
"Public Health was the lead on this investigation. And I think you can appreciate that when an investigation into a potential cluster of neurological syndrome is taking place, it should be from an unbiased perspective."
In the fall, Marrero told Enquête he continues to believe there's an unknown illness.
"I believe that there is an unknown disease for which I see more and more cases and more and more young people who must have a diagnosis and who deserve to have a thorough research by teams, experts in the field, nationally and even internationally," he told Radio-Canada.
"I am convinced that it is gaining momentum, because I see it clinically."