Doctor who sounded alarm on mystery disease sidelined from province's investigation

Back in April, more than a month after New Brunswick public health officials first sounded the alarm about "a distinct atypical neurological syndrome," Health Minister Dorothy Shephard pointed to a Moncton neurologist as the person who was going to get to the bottom of what was going on.

It was Dr. Alier Marrero, the man who'd treated most of the 48 patients who make up the cluster and, after initially fearing they had a rare and fatal brain disease, referred them to the federal Creutzfeldt-Jakob Disease Surveillance System. 

The doctor described how, dating back to 2013, he began detecting unusually young patients with progressive neurological symptoms in the Moncton and Acadian Peninsula areas.

Now, months later, Public Health is questioning the validity of the idea of an unknown cluster of neurological illness.

Officials presented a report Wednesday that said they couldn't find any significant behaviour, food or environmental risk factors linked to the cluster of patients.

A second investigation, led by a group Shephard has described as the oversight committee and made up primarily of other neurologists from across New Brunswick, will deliver a second report early next year after doing clinical reviews for all 48 patients, most of whom were treated by Marrero.

But Marrero doesn't seem to be part of that process.

Government officials seemed to distance him from the investigation on Wednesday, and at times, questioned his work, even if not referring to him directly by name.

"We have also had concerns about the [Creutzfeldt-Jakob Disease Surveillance System's] over-reliance on the validity of information received from individual physicians," says a letter Shephard sent to federal Health Minister Jean-Yves Duclos on Wednesday, without mentioning Marrero by name.

But both Shephard's own comments and records obtained by CBC News through access to information show Marrero played a key role in its early investigation into the syndrome, before his role was changed in recent months.

In April, Shephard was asked what was being done to figure out what the cluster of illness is and who was on the team tasked with doing it.

"The steering committee is led by Dr. Marrero out of Moncton," Shephard told Information Morning Fredericton's Political Panel in April. 

Even in late May, after the province created an oversight committee, made up mostly of other neurologists from New Brunswick to provide a second opinion of Marrero's work, Shephard made it sound as though Marrero would continue to 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," Shepherd said on May 27.