A Moncton neurologist who raised the alarm about young patients with unusual, progressive neurological symptoms will no longer work at a clinic that treated many of his patients.
The province’s former health minister once pointed to Dr. Alier Marrero as the man who would get to the bottom of what public health officials previously described as a “cluster of neurological syndrome of unknown cause.”
Marrero identified 46 of the 48 patients included by the government in the cluster. But as of Aug. 1, he will no longer work at the Moncton Interdisciplinary Neurodegenerative Disease Clinic, known as the MIND Clinic, at the Moncton Hospital, Horizon Health confirmed.
In a statement, Dr. Susan Bryan, 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 Center in Moncton or be appointed a new neurologist at the MIND clinic and get a new assessment.
“Continued follow-up 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 fellows in psychiatry, speech pathology, physical therapy, and occupational medicine therapy,” it said. Brian.
Dr. Susan Bryan, Horizon’s vice president of medical, academic and research affairs, says patients can continue to see Marrero at another Moncton hospital or be assigned a new neurologist at the MIND clinic. (CBC)
Bryan’s statement did not say why Marrero will no longer be at the clinic. When asked, Brian said Marrero works for Vitalité and Dumont Hospital is his primary practice. She said he will continue to have privileges at Moncton Hospital.
“We express our appreciation to him for his cooperation,” Brian wrote. “If you wish to discuss the details of his practice, it would be best to contact him directly.”
Marrero did not grant an interview.
The province says there is no known disease
A panel of mostly New Brunswick neurologists reviewed the records of the 48 patients in the cluster.
The panel, which did not include Marrero, found that while some patients had unusual symptoms, they did not have a common, unknown disease.
“The review panel unanimously agreed that these 48 people should never have been identified as suffering from a neurological syndrome of unknown cause and that, based on the evidence reviewed, no such syndrome exists,” said the health’s chief medical officer, Dr. Jennifer Russell in February .
“Public health agrees with these findings, but again, this does not mean that these people are not seriously ill. It means they are suffering from some neurological disease.”
Many of these patients continue to be treated at the MIND clinic, which opened in April 2021 to assess and treat “patients suffering from rapid or early cognitive decline”.
“Some of these patients have serious known conditions that profoundly affect their lives, and several patients require follow-up testing, evaluation and care,” the clinic’s website says.
Some patients follow Marrero to Dumont
But now some patients will have to leave the MIND clinic to continue seeing Marrero.
They include Derek Cuthbertson, who was said to be a member of the cluster of 48, and his stepdaughter Gillian Lucas.
For more than four years, Cuthbertson struggled with symptoms ranging from dizziness and memory problems to problems speaking and formulating words.
“A lot of times I 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 his stepfather, began visiting Marrero after she felt she was experiencing symptoms similar to Cuthbertson’s, including problems with memory and balance. Lucas had a concussion a few years ago, but said Marrero doesn’t believe that explains all of her symptoms and test results.
Both plan to continue seeing Marrero at Dumont, but that means they will lose access to the other specialists at the MIND clinic.
“I have full trust and faith in him and I’m following him,” Lucas said.
Steve Ellis also plans to move care for his 64-year-old father to Dumont to follow Marrero. He fears it will take longer to get an appointment now that Marrero is no longer at the MIND clinic, and he believes 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 trying to make us look like there’s nothing wrong with us,” Ellis said.
He wants families to be able to continue visiting Marrero and access services at the MIND clinic, but Ellis doesn’t want another neurologist treating his father, who is also among the 48.
Steve Ellis, pictured here with his father, Roger Ellis, says he doesn’t trust any other neurologist in New Brunswick to care for his father. (Submitted by Steve Ellis)
“They owe it to us, at the very least, to tell us why he was suspended,” Ellis said.
“Obviously it would be better for them to just reverse their decision, which is our goal: to send him back to the MIND clinic.” But if they won’t do that, you have to tell us why it was removed, period.”
Marrero recused himself from the investigation
The change at the MIND clinic comes a year after the province removed Marrero from the cluster investigation.
In April 2021, around the same time the MIND clinic opened, former health minister Dorothy Shepherd said Marrero was leading a steering committee looking at the disease.
Even after the oversight committee was formed in May and Marrero was not part of the committee, Shepherd suggested Marrero would still play a key role.
“We have established an oversight committee to assist Dr. Marrero in this process and to ensure that we cover all our bases and all the information that [patients] give, we want to make sure we put expert eyes on it to make it the best,” Shepherd said on May 27.
But by last June, after months of regular meetings with public health officials, Marrero was ruled out.
“All of a sudden, in the month of June, we decided it was New Brunswick, with the committee that was created to take charge of everything, and we were kept out of it,” Marrero told Radio-Canada’s Enquête last year.
In October, government officials went further to distance themselves from Marrero, saying the investigation needed to be “bigger than just one neuroscientist.”
“Dr. Marrero was not the lead in this investigation,” Shepherd said at a news conference.
Dr. Alier Marrero was consulted by Public Health about a cluster of neurological conditions for months before he was removed from the investigation in the spring of 2021, records show. (Virginia Smart/CBC)
“Public Health has been leading this investigation. And I think you can appreciate that when an investigation is conducted into a potential neurological syndrome cluster, it should be from an unbiased point of view.”
In the fall, Marrero told the Enquête that he continued to believe he had an unknown illness.
“I believe there is an unknown disease that I see more and more cases and more and more young people who need to be diagnosed and who deserve a thorough investigation by teams, experts in the field, nationally and even internationally,” he told radio-canada.
“I’m convinced it’s picking up speed because I’m seeing it clinically.
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